Blog Post #4: "Time Stamp"

I recently had a conversation with a friend of mine who just lost his brother suddenly. We were talk-crying about how we have to keep living every day without our siblings, and he mentioned "well, this is just the 'new normal'" to which I snapped back "NOTHING ABOUT THIS IS NORMAL!" God, I HATE that saying. A new normal would be a new pair of shoes I bought and then complained "these Jimmy Choos are KILLING my feet", or a new brother-in-law that you are tired of calling "my sister's boyfriend", or a new city you've never visited and thought to yourself "I want to go to Fez" and dumped your entire savings account into a plane ticket. I remember going with Grace to one of her radiation appointments where she walked me around the hospital pointing out everything like she was giving me a tour of her new apartment.  She made it seem so normal, but I know she was doing this to put me at ease.  She and I both knew, nothing about this was normal.  Living without someone whether it be a relocation, or a breakup, and or (obviously) a death, doesn't ever get easier, but you learn how to live without them. And no, it will never be normal. 

Full of Grace,

Molly (Grace's Sister)

“You never really live until you know you’re going to die.”

I don’t know how many of you have seen the movie “Big Fish”, but there is a scene where if you look into this witches eye ball you see how you’re going to die. I have looked into that eyeball, I know how I’m going to die.

July 3rd was my next scheduled MRI.

It’s always the worst when my team of doctors come in the room with somber looks on their faces because we have gotten close and I really like them even though they’re about to hit me with bad news. The tumor is growing and it’s not going to stop. They gave me 3 options. 1) I could do re-radiation, and continue with my chemo, 2) go out and try a study in San Fran which would take me away from all of my friends and family, or 3) nothing. I ruled out #2, and turns out I wasn’t even eligible because I’ve had 3 failed treatments. I had to choose between 1 & 3. Re-radiation would cause my hair loss again, make me extremely lethargic, and I would have to go to the hospital every day. I wasn’t jumping to this option because it could potentially do absolutely nothing. My 3rd choice being nothing was my bittersweet option. I could just live my life. I wouldn’t have to go to the hospital every day, I could keep my hair (I know that sounds vain, but I was miserable without it), and I could live as happy as I could be, carefree to live each day to the fullest with the people I love until it was time for me to go. This decision weighed harder on me than anything I’ve ever endured. Everyone kept saying how this was my choice and they would support me with my decision, but I knew it would break my loved ones hearts if I did nothing. I chose #2. I am doing re-radiation and chemo. I am not ready to sit back, wave my white flag and tell cancer that it won. I’m going down with a fight. 

(FYI, Grace's sisters sent me photos and I thought this one was the most appropriate for this post, sorry not sorry if it offends anyone. Mary)

When my doctor gave me the news that my tumor was not getting better and that it would most likely never get better, I just remember looking up at the ceiling and holding back tears and yelling, “FUCK!!!!!!”. I don’t remember other peoples reactions or any other sounds in the room. My next words were, “how long?”, and he said, “6 months… but don’t quote me on that”. 6 months. 6 months. 6 mother-effing months. July 3rd - January 3rd. I felt like I just got an expiration date stamped on my forehead. I couldn’t comprehend it and I will never comprehend it. I didn’t mark it in my calender or anything and I’m still hoping and praying I’ll defy the odds. But I can’t help but think about it because I ultimately know what is going to happen. I like knowing what is going to happen. I don’t like things sugar coated. So while I’m crying, I manage to get out “how will it happen?” I know my family didn’t want to hear it and that my doctors didn’t want to tell it. But they did. They said I’ll start to lose mobility. I’ll become more tired. Sleep 12+ hours a day, then more. I’ll lose interest in most things. I won’t have the desire to eat and I may not be able to eat. They’ll have to crush up my pills and put them in thick liquid that I’ll somehow have to drink. Then one day I just won’t wake up. I asked if I’ll start losing perception and what’s going on around me and they said no, I’ll be me until the last moment.

A lot of you might be wondering how and why I’m writing this for the whole world to see, and the answer is that I cannot do it in person. I can’t say it out loud. If I talk about it, I cannot hold back my tears. When I got the news, I texted my best friend Sarah and told her. I then asked her if she could tell our other best friends because I couldn’t tell them their best friend is dying. Her response was, “how could I possibly tell them that my best friend is dying?” So I told my close friends. It’s true, it needs to come from me, so that’s why I’m writing this. I’m not tip-toeing around my terminal illness. Here it is, black and white.

I started re-radiation on Tuesday and while sitting in the waiting room I was looking around and thinking. Every day doctor appointments are a lot like school. I was comfortable at my old radiation school. I knew the receptionist and chatted with the other patients. It was almost sad when I finished up my fist round of radiation because I knew I wouldn’t see them every day. But now that I’m back, it’s like I didn’t pass and I’m stuck here with a new class that already has a bond. Everyone was talking around me and asking how their weekend was, how the kids are, etc, and I’m just quietly sitting there trying to fit into cancer school that I already knew. I had flunked cancer school after I had graduated, and now I’m about to be expelled.

Having this time limit on life, really makes you want to get moving. I thought I had so many years to accomplish things, and now my deadline has moved to just a couple months. A lot of things that I wanted to accomplish in my life have been taken away from me. I believed I was put on this earth to be a mother. Before being a mother, I wanted to be a teacher and help inspire kids. I wanted to get married. I wanted to be the “fun aunt” to my sisters kids. I wanted to go on trips with my best friends when we got older. I wanted to see, do, and experience so much more. I wanted to live. And this disease has ripped all of that away from me. I try and be strong and put on a brave face, and a lot of the time that brave face is real. Other times I’m trembling behind it. But I’m trying. Cancer may have given me a time limit, but I’m not ready to give up.

I’m going to wrap up because my hands are getting tired, but I hope this blog didn’t come on too strong and make anyone uncomfortable. I just want to be upfront because what’s the point in hiding now?

“When life gives you lemons, don’t make lemonade! Try to give them back. When you can’t give them back, put them in your back pocket and say, "Fuck it, I’m going to go have a beer! Don’t settle for the lemonade.”

Weird quote, but I laughed… and it’s kind of true. Don’t settle for what’s given to you that you can’t give back. Go and get what you want.

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I'll never forget the day Grace talks about in this blog post.  I was one of the "somber people" walking in the room.  Time Snap Shop operated unofficially for months as "TIME STAMP" before I decided on Time Snap Shop.  I'm reminded often (although I didn't know it at the time) that this business has everything to do with the work I have done in oncology, end of life, and why I had the passion to create a product to easily capture moments in our busy lives.  

As we know, life can be fragile and the only guarantee we have is that we are all going to die someday.  As I get ready to welcome baby #3 and know Grace was put on this earth to be a mom, I think of her often and know she would have given anything to be in my 39-week waddling pregnant shoes.  She would be grateful to just to be alive and living and she would have been the best Mom.  I've never seen more joy in someone when they talked about kids.  I'm gonna channel my inner Grace though the next several months of sleep deprivation as best I can because at the end of the day, even the things that make us challenged and tired - it's all a gift we get to live.  I'd love to hear from you, drop a comment and if you would like to receive these blog posts directly to your inbox, please sign up for our newsletter here. 

Full of Grace,

Mary Koludrovic, Time Snap Shop Owner

Miss her previous blog post?  Catch up by reading her third blog post here.