Struggling With Change

Thanks to a very kind soul, who follows my Instagram @braincancer _babe and who inspired me, I thought this was a great topic to start off this new decade. The idea of change has certainly been discussed throughout my prior posts. Yet, now it’s very different.

I struggle with any kind of major change, like seriously struggle!  However, I’m not one to just sit around day-in day-out, and accept redundancy. I get bored very easily doing the same thing all the time. In fact, it makes me utterly miserable. These two concepts may seem to conflict, but they actually don’t.

As a very simple example, I lived in the same one-bedroom apartment for 17 years. That is pretty much unheard of in the New York City metro area for someone in my age bracket (under 40 years old). Moving and even the thought of moving was horrifyingly stressful. Yet, my resume was full of varying places of work because I found every job, up until my last, so painfully boring. Another example is that I hated being on my couch doing nothing. I always had to keep busy, go out, work out or be active in some way shape or form. Otherwise, I’d be left with my thoughts and I’d drive myself crazy worrying about some meaningless thing. However, I also needed, No demanded, time to just be alone.

My Myers-Briggs personality is something in between an introvert and extrovert. I just don’t remember exactly what it is at the moment.

Anyway, more to my point and what brought me to write this post, is to discuss just how deeply challenging my diagnosis/treatment/side effects of treatment/what-have-you and the changes they’ve caused have been.

In my humble opinion, no one can ever go back 100% to the person they were prior to a cancer diagnosis. You learn to live the “new normal”, as many of us say. I went from being a career-driven litigation attorney in Manhattan, to someone who still cringes when asked, “What do you do for a living?” or when having to check the “disabled” box on any form asking about my employment status. I went from a young woman, who always wore make-up, had her hair & nails done in my 4-inch heels and power suit, to what I’ve donned “homeless chic” (no offense to the homeless). If you’re wondering what that looks like, it’s sweats, sneakers, no make-up, messy hair, my cane, a hat to cover my bald spot, and NOTHING like what I looked like before.

While this all may sound very vain and petty, it’s actually not. As a wonderful nurse in acute rehab told me years ago,”You’re allowed to grieve the former you – no matter what that is.”

Even worse is the total loss of independence. Right now, as I await my 7th brain surgery in less than 6 and a half years, I have no use of my left hand and cannot raise my left arm above my head. My balance and coordination is so off, I cannot be left alone. My husband is with me 100% of the time, minus the occasional trip to the grocery store or to pick-up my meds. Yes, I am extremely fortunate to have him here, but losing every once of independence I once had is mind-numbing. Obviously, I cannot drive. It’s too cold here for me to even go outside because if I do my whole left side tenses-up so much it’s physically painful. I used to constantly work out. Now, I can’t even do physical therapy. Hell, just walking to the bathroom is a feat these days.

Halloween 2019, of all days, I wound up in Urgent Care at my hospital after a bad fall at home. I was admitted, but waited until 4:30 a.m. to get a room. My scan results led to my 6th surgery, to drain the fluid from my brain. Yet, the tumor removals and so much radiation to my brain in 2014 & then 2015 created this cavity in my brain, where fluid will consistently flow into, and cause constant imbalance and pressure inside my head. Thus, there are no other options but this 7th surgery.

I actually fell a few weeks ago. I believe I experienced my 1st concussion. Whoa. That was not fun! Besides being covered in blood by the gash across my eyebrow, I immediately became nauseous and wanted to just go to sleep. I truly saw stars and couldn’t focus my vision. I’ll tell you, I do NOT know how football players do it. (I write this while my husband is literally watching football)

My poor, poor brain!

So, Yes, I hate the negative changes brain cancer has caused. It is an every day struggle to face these challenges! However, as I’ve written throughout this lil ole blog of mine, it has brought positive change as well. I’m not going to rehash them all here, but some very important ones:

  1. I never knew just how strong I was until I had to face this beast and all the havoc it has wreaked upon my life.
  2. I have learned who truly loves and cares for me – and who doesn’t. It’s a painful lesson in many ways, but I found “my tribe” and I’ll never let them go.
  3. I was always an advocate – that’s kinda the whole lawyer side of me; but, I know through my charity work that I’ve inspired people I may never even meet face-to-face. That’s why I tell my story to anyone who will listen. If I help just one person, well then, that’s enough.
  4. I’m not just a survivor. I’m a “thriver”! I took on brain cancer, twice, and said, “Nope! Ya, ain’t gettin’ this stubborn Irish girl” or at least that’s what I like to tell myself… whatever works.
  5. Yes, I’ve had some very dark moments, some even in the last week or so, but I MUST fight on.