It’s pretty surreal being back home after my 7th brain surgery, a full week in ICU and then 2 1/2 weeks in acute, inpatient rehabilitation. It was strangely very bittersweet leaving rehab, where I had a very set schedule, was taken care of so wonderfully and most importantly, able to remove myself from reality. As the fantastic ‘90s movie says, “Reality Bites”.
Room With A View
View from my window at inpatient rehabilitation.
When I was initially told I’d be in acute rehab for more than 2 weeks, I had a pure and utter meltdown. I couldn’t imagine being cooped-up for that long without my husband, my dog, my own bed, any semblance of privacy, and on and on. Ugly tears everywhere! So many, many ugly tears
Yet, now that I’m out and back home, I feel completely overwhelmed. Piles of mail sat on my desk. Things weren’t in their “proper place”. (I’m no neat-freak but I’m very Type A when it comes to where things are placed, kept, etc. I don’t know, blame my parents… 🤔🤷🏻♀️) I had to make countless follow-up appointments. I had to call the apartment management because yet again, some dirtbag threw their cigarette butt onto our terrace. My darling husband fell for one of the easiest scams ever, and the laptop only I use got hacked. I not-so kindly asked him if I could introduce him to a Nigerian Prince.
Then came the real kicker! I received a letter from a debt collection law firm (the lowest of the low on the attorney food chain) threatening to file suit against ME because the home healthcare agency I was forced to use back in 2018 never paid the company THEY contracted with to give me home PT & OT. ***If you are reading this and are a debt collection attorney, I make no apologies. As an attorney myself, I’d rather chase ambulances***
Well, that of course set up a whole chain of phone calls to my insurance, my family attorney and the law firm threatening suit. Then, I proceeded to look back on all my prior correspondence with the home healthcare agency and the company seeking to sue me because they hadn’t been paid. Finally, I wrote a lengthy email to all parties, copying my attorney, having to “make my case” in writing how I was in no way responsible for this money, threatening to sue the firm for harassment, and underscoring that the Court wouldn’t look too favorably upon some firm trying to make a recovering cancer survivor pay almost $5,000 because their client signed a contract with a less-than reputable home healthcare agency.
So, yeah, reality really f***in’ bites! While I imagined coming home would be so joyous and relaxing, it’s been anything but relaxing. Who leaves the hospital after nearly one month and actually wants to go back???
I know things will settle down, and I’m being a bit dramatic. My fellow patients I met during my stay, who will remain hospitalized for some time would probably kick me for wishing I was back there. However, there’s something very distressing about returning home, no longer just one “call bell” away from help. I was so fortunate to have been in such a top-notch facility. There was always someone to talk to, who understood everything I was going through. Whether it was a social worker, a therapist, a nurse or fellow patient-someone was constantly there to support me. They were right there in the trenches with me, and there wasn’t ANYTHING those nurses, aides, or doctors hadn’t seen or heard before. It was a total judgment free zone.
So, now I’m out. I’m back to the real world. Maybe I just need to chill out on my couch with some friends, puff a lil of my medicinal med not permitted in the hospital, go grab snacks at a gas station and start dancing to some cheesy music. (If you’ve seen the movie, you’ll get the reference)
Thanks to a very kind soul, who follows my Instagram @braincancer _babe and who inspired me, I thought this was a great topic to start off this new decade. The idea of change has certainly been discussed throughout my prior posts. Yet, now it’s very different.
I struggle with any kind of major change, like seriously struggle! However, I’m not one to just sit around day-in day-out, and accept redundancy. I get bored very easily doing the same thing all the time. In fact, it makes me utterly miserable. These two concepts may seem to conflict, but they actually don’t.
As a very simple example, I lived in the same one-bedroom apartment for 17 years. That is pretty much unheard of in the New York City metro area for someone in my age bracket (under 40 years old). Moving and even the thought of moving was horrifyingly stressful. Yet, my resume was full of varying places of work because I found every job, up until my last, so painfully boring. Another example is that I hated being on my couch doing nothing. I always had to keep busy, go out, work out or be active in some way shape or form. Otherwise, I’d be left with my thoughts and I’d drive myself crazy worrying about some meaningless thing. However, I also needed, No demanded, time to just be alone.
My Myers-Briggs personality is something in between an introvert and extrovert. I just don’t remember exactly what it is at the moment.
Anyway, more to my point and what brought me to write this post, is to discuss just how deeply challenging my diagnosis/treatment/side effects of treatment/what-have-you and the changes they’ve caused have been.
In my humble opinion, no one can ever go back 100% to the person they were prior to a cancer diagnosis. You learn to live the “new normal”, as many of us say. I went from being a career-driven litigation attorney in Manhattan, to someone who still cringes when asked, “What do you do for a living?” or when having to check the “disabled” box on any form asking about my employment status. I went from a young woman, who always wore make-up, had her hair & nails done in my 4-inch heels and power suit, to what I’ve donned “homeless chic” (no offense to the homeless). If you’re wondering what that looks like, it’s sweats, sneakers, no make-up, messy hair, my cane, a hat to cover my bald spot, and NOTHING like what I looked like before.
While this all may sound very vain and petty, it’s actually not. As a wonderful nurse in acute rehab told me years ago,”You’re allowed to grieve the former you – no matter what that is.”
Even worse is the total loss of independence. Right now, as I await my 7th brain surgery in less than 6 and a half years, I have no use of my left hand and cannot raise my left arm above my head. My balance and coordination is so off, I cannot be left alone. My husband is with me 100% of the time, minus the occasional trip to the grocery store or to pick-up my meds. Yes, I am extremely fortunate to have him here, but losing every once of independence I once had is mind-numbing. Obviously, I cannot drive. It’s too cold here for me to even go outside because if I do my whole left side tenses-up so much it’s physically painful. I used to constantly work out. Now, I can’t even do physical therapy. Hell, just walking to the bathroom is a feat these days.
Halloween 2019, of all days, I wound up in Urgent Care at my hospital after a bad fall at home. I was admitted, but waited until 4:30 a.m. to get a room. My scan results led to my 6th surgery, to drain the fluid from my brain. Yet, the tumor removals and so much radiation to my brain in 2014 & then 2015 created this cavity in my brain, where fluid will consistently flow into, and cause constant imbalance and pressure inside my head. Thus, there are no other options but this 7th surgery.
I actually fell a few weeks ago. I believe I experienced my 1st concussion. Whoa. That was not fun! Besides being covered in blood by the gash across my eyebrow, I immediately became nauseous and wanted to just go to sleep. I truly saw stars and couldn’t focus my vision. I’ll tell you, I do NOT know how football players do it. (I write this while my husband is literally watching football)
My poor, poor brain!
So, Yes, I hate the negative changes brain cancer has caused. It is an every day struggle to face these challenges! However, as I’ve written throughout this lil ole blog of mine, it has brought positive change as well. I’m not going to rehash them all here, but some very important ones:
I never knew just how strong I was until I had to face this beast and all the havoc it has wreaked upon my life.
I have learned who truly loves and cares for me – and who doesn’t. It’s a painful lesson in many ways, but I found “my tribe” and I’ll never let them go.
I was always an advocate – that’s kinda the whole lawyer side of me; but, I know through my charity work that I’ve inspired people I may never even meet face-to-face. That’s why I tell my story to anyone who will listen. If I help just one person, well then, that’s enough.
I’m not just a survivor. I’m a “thriver”! I took on brain cancer, twice, and said, “Nope! Ya, ain’t gettin’ this stubborn Irish girl” or at least that’s what I like to tell myself… whatever works.
Yes, I’ve had some very dark moments, some even in the last week or so, but I MUST fight on.
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.
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?
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.
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.
It took so much for me to sit down and create this blog. I was so self-conscious and intimidated by the idea of opening myself up like this. Still to this day, a few months since I began the blog, very few of my friends and family know about it.
I’ve spoken publicly many times about my story and this “cancer chaos.” However, there is just something that feels so different about putting it all out there on the worldwide web, for absolutely anyone to read, anyone to find.
I recently listened to a video by Gabby Bernstein (if you don’t know her, you need to! http://gabbybernstein.com/. One of her particular messages is that it is our responsibility to share our own empowering message – to share your story. Along with that, she also teaches not to compare ourselves in telling that story – there are more people in need than those who are serving that need. In other words, even if there are 300 people out there with a similar story, there’s so many more people in need of hearing those stories. Plus, your story is your own! It is different from every single one of those 300 other people’s stories.
So, with that motivation, I decided to put myself out there just a little bit more, beyond this blog.
Through Twitter, which I also joined at the same time as I began this blog, I found an incredible woman, Claire Bullimore. Claire is a fellow brain tumor survivor. She is the founder of Aunty M Brain Tumours, a radio presenter on Croydon Radio (online) and the host of a show dedicated to people affected by brain tumours, called the Aunty M Brain Tumours Talk show. As Claire says on her website, her show is there “to give a voice to brain tumour sufferers, survivors, family or friends.” AND, this was key – her website said that she interviews “anyone who wants to have a voice or tell their story.”
So, fate/the cosmos/what have you was clearly sending me a message. Tell Your Story!!
All it took was a simple email to Claire and just a few days later, we were setting up an interview for her podcast. It was such an amazing experience and I hope that anyone reading here will listen to my podcast, and all of Claire’s past and future podcasts.
Thank you, Claire! You will always be my first podcast!
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.
After my initial surgery in 2014, I was released on Easter Sunday. I was raised Catholic, but I wouldn’t say I am a practicing one, which I won’t go into the details or reasons behind. Regardless, Easter does have a beautiful meaning. It is symbolic of rising up, celebrating new life and for those who believe, it is a day of miracles.
I found symbolism in being released that day. I was celebrating my new life as a cancer survivor. I was someone who had just overcome overwhelming, dangerous, potentially life-altering (possibly terminal, but we won’t go there) brain surgery. I was walking out of that hospital to return to my own home, my own bed, a hot shower and all in all, a return to a semi-normal life. My surgery had been a success in all ways possible. I felt it was a miracle. Someone up there in the heavens had watched over me. I have no doubt about that.
However, a strange phenomena that comes with the release from the hospital is a feeling of fear and unease. For days, you had that “Call Button” right next to you. If you needed anything, a nurse was right there to assist you. If the nurse couldn’t ease your fears or your concerns, well there was a team of doctors who could help as well. You were constantly monitored. It was safe.
However, after the discharge from the hospital, that all changed. You were essentially on your own to monitor everything you felt, experienced, etc. (of course, that would be different for those who required home services). Was that feeling in my leg the beginning of another seizure? Was the pain in my head just a normal side effect of the surgery, or was it something more? What if I fell? There was no physical therapist at my beckon call.
Then, there was the feeling of helplessness. I had to have someone with me at all times for weeks. It required my husband and family to all coordinate their busy schedules. My husband didn’t want to rely on someone else, but life happens – he had to work. I had always been a fiercely independent person. This was all so new and so overwhelming. However, I was fortunate to have all the support I needed.
At that point, I also had never met a fellow cancer survivor. I couldn’t turn to someone and ask, “Is what I’m feeling normal?” “Will this fear ever resolve, or will I be spending the rest of my life fearing things like another seizure, or worse even, this tumor coming back?” Sure, I talked to my nurses and doctors about all of this. They of course were kind and understanding, but I needed someone who had literally gone through this personally.
So, I began researching organizations dedicated to brain cancer and thankfully found the National Brain Tumor Society (braintumor.org). Once I learned about their fierce advocacy, research and support systems, I looked no further. I immediately started fundraising. I was less than a month out of surgery and I contacted everyone I knew asking for donations. By the next month, I was the highest individual fundraiser for their upcoming local event. I truly believe that my incredible dedication to this organization saved me from some very dark, very detrimental thoughts. I just dove in! There simply wasn’t any time to focus on negativity and fear.
I cannot lie. There were some dark moments. I am fortunate enough to say though, they did not come often and they did not consume me. My dedication to the National Brain Tumor Society (braintumor.org) consumed me instead. So much of my strength and positivity came through my work to advocate and fundraise. It was my therapy.
Of course, my treatment did not end with the release from the hospital. It would be weeks before we came up with a plan and that is a whole nother story for a whole new post.