Blog Post #1: The Beginning-ish: This world isn't exactly what my heart expected...

A note from Mary Koludrovic, Time Snap Shop Owner:

If you are new to this blog, "Stories for Grace" is a series of blog posts written by a young woman who passed away from brain cancer, Grace Oliver.  I had the privilege of being her oncology social worker and working with her family.  I'm sharing her blog posts on our blog, in support of our new mission.  A portion of Time Snap Shop proceeds will benefit Grace Giving, a charity started in her honor that supports Brain Cancer Research and Programs.  Each post is introduced by her older sister, Molly.  Thanks for reading.  

Words from Molly (Grace's Sister):

"Shit puts shit in perspective." - Grace M. Oliver.

When I first asked her "So what do you do all day? I'd be CRUSHING Bravo TV and cheesy feel good rom-coms..." And when her response was, "No, I read books" I found myself somewhat picking my jaw up off the floor, because I haven't met anyone who loved TV as much as Grace did. As she saw my facial expression of total, face-melting shock of trying to wrap my head around the idea of her picking up a book because that’s what she actually wanted to do, she just blatantly said, "Shit puts shit in perspective." She didn't want to waste her time dissolving into keeping up with the Kardashian’s or cringing over which housewife of New York's cocktail party was ruined by yet another blacked-out ex husband (total disclaimer, she eventually got me hooked on all of these shows anyway). Being diagnosed with any type of disease at the age of 21 (or 30, or 53, or 72) will throw anyone's world completely upside down, inside out and around the back, but she did what she had to do, as her perspective on what was important to her had dramatically changed. She put her shit into perspective, which put my shit into perspective and ultimately, I think she put everyone's shit in perspective. And I hope her words help to put your shit in perspective.

Full of Grace,

Molly (Grace's Sister)

April 3^rd, 2014

“This world isn’t exactly what my heart expected.”

 Does that quote even begin to get across what my life has turned out to be? 

I have always been a dreamer. Dreaming of what I hoped for in the future. Living in the city after college, having a career I loved, getting married, having a family, wonderful vacations with my children… and growing old with everyone I love. But in July of 2012, almost 2 years ago, at the young age of 21 all those dreams changed. I had a seizure, which led to brain surgery, which ultimately led to my diagnosis of grade four brain cancer. My senior year of college was put on hold, my hair fell out, people started to tip toe around me and my “situation” as I like to call it. Everything changed. I remember one of my doctors said it was the “New Normal”. Fuck that, nothing about having cancer is normal. I did have to adapt to a few new aspects of my life, such as not being able to drive and living at home with my parents while all my friends went back to live it up at college. At that point, that was the hardest. Staying behind. The fact that I had cancer hadn’t really sunk in yet, and I honestly don’t think it ever will. But staying behind while everyone kept going was the worst part of this disease. There was no way to cope. I couldn’t turn my brain off. Thoughts of my future started to slip away, but at the same time the reality of it didn’t seem all that real. As I said before, I don’t think it will ever seem completely real.

I felt like I lived in the doctors office. I was skipping around town visiting different doctors to get more opinions, see what my treatment options were, getting everything in order for this bomb that dropped in on my life, while my friends were packing up their cars and driving in the direction that I really wanted to be going back to. School. I was 21 and all of a sudden I had to start undergoing fertility treatment because the radiation I would undergo would most likely damage any chance of having kids later in life. I would sit in the doctors office with my mom, surrounded by couples holding hands, looking into each others eyes, hoping they would receive good news. It almost made me feel guilty because I hadn’t dreamed of having kids at my age. But all of a sudden it was something I had to take care of. (I am happy to say that my possible future kids are chilling up in Minnesota for a big fee every year). 

I underwent about 30 rounds of radiation and oral chemotherapy, which means I just had to take a pill. Every day for 30 days I would sit at my kitchen counter with a prayer card and read the prayer to myself before I took the pill. Slowly hair would come out as I brushed my hair, or when I would look down at the shower there would be a small pile of my long brown locks. I don’t want to sound vain, but I had beautiful brown hair with natural highlights, I did NOT want to lose it. So I didn’t shave my head like most people with cancer do. I only lost it in the spots that the radiation beams hit. So I was balding on the top of my head, the bottom of my hair was still there. It was quite the look. After that was all done, my scans were good and I returned to college for the second semester! I cannot put into words how wonderful it felt to get back to school and my friends. I was getting my independence back. I was allowed to drive again, I was done with radiation so I wasn’t as tired. I did have to take my chemo pills once a month for 5 days, but I was back, baby! Because I was a semester behind I wasn’t able to graduate with my friends. Talk about a heart break. As happy as I was to see all my best friends receive their diplomas and search for jobs… it absolutely crushed me that I wasn’t there yet. But I was there with them, and that mattered the world to me. Then, it was time to move back home and get a summer job and take some summer courses to catch up on what I missed. I was due for another MRI in August. The summer was going good for the most part. I visited my boyfriend at Notre Dame, my friends back in St. Louis, and just hung out with my friends from home. Things were “normal”. Then one night in August I had multiple seizures, was taken to the emergency room, and immediately scheduled for surgery. My seizures were so bad that I was unable to walk. So this surgery was different than my previous one. This surgery I had to stay awake for half of it while my head was cut open again. Can you even imagine that? They wanted to keep track of the mobility of my left side. When I woke up from surgery I couldn’t use my left leg or arm. To me, they seemed dead. This was certainly not something I dreamed I would have to go through. From there I was moved to the Rehabilitation Institute of Chicago. I would do Physical Therapy and Occupational Therapy from morning until evening. They kept me there for almost a month with an 80 year old roommate who didn’t speak English. That was quite the experience. Once again I wouldn’t be returning to school. When I was released from RIC, I would have to do out-patient PT and OT. I arrived on my first day in a wheelchair and walked out on my last day with just a leg brace and my left arm stronger than my right! I met some of the most wonderful people there who helped accomplish my goal to walk again. I weeped at my “graduation” day, but I know they will be lifelong friends.

Since my last round of treatment wasn’t exactly effective, I am now undergoing a chemotherapy study. I go to the hospital once a week for about 2 hours and get a chemo drip through an IV. My scans haven’t changed, so I like to think that “no news is good news”. 

So, that is where I am at in my cancer-career. I am now 23 years old and almost at my 2 year mark of being a cancer survivor. My dreams have shifted a bit, but they are still there. I do keep my dreams closer now. I dream of making it to the next year. I dream of good, clean MRI scans. I dream of living my life happily with the people I love. And I dream that I live old enough to have that family I’ve always dreamt of. My world is definitely not exactly what my heart expected, but I’m fighting my hardest to keep my dreams, and myself alive.

Small disclaimer: I am not a professional writer, as you can already tell. I tend to ramble on and get side-tracked easily. I hope I don’t make run-on sentences and if I do, I hope my old English teachers don’t read this.

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Thank you for reading.  As you can tell, she was a special person.  We would love to hear a comment from you, especially if you knew Grace.  If you would like to receive these blog posts directly to your inbox, please sign up for our newsletter here. 

Full of Grace,

Mary (Time Snap Shop Owner)

Read our previous post on why we launched Stories for Grace here or read Blog Post #2 here.