Let’s Take it from the Top

I loathe journaling…there, I’ve said it. It feels surprisingly good to get that off my chest. I’ve always loathed journaling, and journals themselves for that matter. They’re always the gift you get from your grandma or your mom’s good friend from high school who happened to be in Barnes and Nobel around the time of your birthday or some significant milestone you’ve reached. I imagine they are in the check-out line and think “Oh hey, this is cute! Everyone could use a journal”. Yeah no, not me though. I’m not trying to sound unappreciative or bitchy, but those blank pages can be very daunting! And in the past, whenever I forced myself to write a little something at night before bed, it always sounded super cliché when I re-read it in the morning – or as though I was writing something that I wanted someone to find at a later date. It was as though I was trying to make it extra detailed and exaggerated, so if a sneaky sibling or parent found it, they would have something juicy to report. C’mon, we’ve all seen those tween movies where it happens (Mary-Kate and Ashley, perhaps?), and it’s always endearing and cute to watch no matter how repetitive and totally expected. But what isn’t cute is a journal with a completely shredded binding from all the pages being ripped and scrapped in the garbage by the next day. Oops, sorry, Granny!

It’s funny though since here I am trying to blog, and one would think that journaling and blogging are basically the same thing. And to be quite honest, I do too; but I feel like it’s finally time to unload all my mental and some virtual desktop sticky notes (don’t you just love that app?) that I’ve been accumulating over the long time in hopes that someone, anyone could gain something meaningful from reading this. Today, in fact, marks the 2 year anniversary that I started this journey with “da da DAAA….. CANCER”. Yes, this is primarily a blog about cancer and all the trials and tribulations that go along with cancer – specifically with being a young adult with cancer. But I also want it to be a place of hope, laughter, and dare I say inspiration, for anyone who needs a pick-me-up or is bored on a Thursday night and is browsing around looking for something to read.

So I realized I sprung the word cancer on you pretty bluntly, even though it is in the title. For those of you who don’t know me at all or know of me but maybe not personally, yes I have cancer. Or HAD cancer I like to clarify….twice! So I guess my official title is “ Ms. Sexy Two-time Cancer Survivor”, and yes the sexy is required. Ha ha. In a nutshell, a dance injury led to the rupture of a tumor in my lower abdomen. But since the pain subsided by the next morning and there was only a slight swelling, I figured I had pulled an abdominal muscle or something totally benign like that. Up until that point I had been in perfect bill health, so I never ever expected in a million years that that swollen mass would actually turn out to be cancer, namely Ewing’s Sarcoma, a rare and very aggressive pediatric cancer usually found in the bone. (Although because mine originated in the soft tissue, it was considered all the more rare.) I found out on the Monday of finals week of my sophomore year of college, right before the holiday break. Needless to say, I was completely in denial and I think that’s what got me through the 2 surgeries, 7 rounds of intense chemo, and 3 weeks of daily radiation. Of course, there were days when I broke down, but I was so gung-ho about pushing through and getting to “the light at the end of the tunnel” where I would feel like myself again and everything would return to normal that I didn’t want to stop and consider that maybe cancer would always be a part of me. I was naïve. Treatment left me with very low blood count levels even months later, which meant I had to get multiple transfusions every week to keep up energy wise and ensure my blood was able to clot. Even though my doctors warned me that the prolonged delay in the recovery of my counts was considered abnormal and remained a concern, I still tried to move on with my life and go back to school figuring, “I need to move on! I can’t wait for something to happen or not happen with these counts, so let’s try and make it work!” Two weeks into the semester, my parents had to drive down to see me and deliver the crushing news that the low blood counts were a result of MDS, basically a pre-leukemia the doctors had confirmed, caused by all the treatment I had done for the Ewing’s. Yes, try to wrap your brain around that one folks…the TREATMENT FOR THE FIRST CANCER CAUSED THE SECOND ONE. I was told that that only happens about 5% of the time. Boy, did I feel special that day. As my head spun out of control, my parents and I quietly cried together in my room at the sorority house. Although I’d known in the very back of my mind that this was always a possibility (because of the low counts), I guess I’d imagined I’d be spared, because I had chosen to move on and “be strong” and had tried to gain back a sense of normalcy by returning to school. What scared me the most was that through my own research, I knew my only option for survival was to do a stem-cell transplant, which I read were extremely tricky and had high mortality rates at any age. My life at that point felt hopeless, and I remember even thinking for the first time about what I wanted my funeral to look like….only I wanted it to be called a “remembrance ceremony” and I wanted Italian food and snazzy wardrobe choices to be involved – no boring black!

Fast forward: These days, I am over the moon and wake up every day grateful that the transplant was considered a success (I will go more in depth about that in my next post since it’s most relevant.) And though I’m still dealing with some complications related to the transplant, I feel I am more open and have more love to give and receive from others and the universe than I’ve ever had in my whole life. It sounds corny maybe, and of course, I still have my sarcastic wits about me as always, but I can tell I have changed for the better, and the way I view life has shifted. I’m a more understanding and compassionate person, and I’m more patient with myself and others who are also going through a rough time. Before cancer, I only really cared about what directly affected me, and my world revolved around whatever I was planning or looking forward to – usually something fun or self-serving. I know I’m not alone in that, but now I’m taking the time to stop and appreciate even the smallest of blessings and the little things that used to seem inconsequential. This life shift has also heightened and solidified my interests and passion in the realm of beauty, fashion, and design, so I plan to touch on that a good deal on this blog as well. And though it’s a lofty goal, I’m planning on doing a corresponding channel on YouTube; I will leave the link to it just as soon as I have a video or two uploaded and ready to go.

SO, TO CUT TO THE CHASE: My main goal and the point of this blog is to share my thoughts and personal anecdotes, both hysterical and tragic, or tragically hysterical. I also intend to share tips and tricks, beauty and non-beauty related, for other young adult survivors that will hopefully help them along their journey. I know that when I was scouring the internet after I was first diagnosed and the night before my first day of chemo, I had a very difficult time finding anything that was informative yet personal. I just wanted to see someone on the other side saying “It’s going to be okay. If I can make it through, you can too.” However, basically everything I found on YouTube was sponsored and scripted by hospitals to use like propaganda or ad campaigns. I want this blog and my channel to be different…they will be different. Even if only a handful of family and friends and an internet wanderer or two make their way to my blog and watch my videos, this is worth it. Everyone in some way has been touched by cancer they say, so I want to show that cancer can be beautiful too.

9 Comments on “Let’s Take it from the Top”

  1. Ali – your writing is incredibly beautiful – I had tears in my eyes as I was smiling at your writing. Please pursue this writing gift for it is truly a gift.
    You are a warrior!


  2. You don’t know me, Ali, but I’m a member of UCS. All I can say is, WOW! Thank you for sharing your incredible journey; you have expanded my world in a lovely way. Keep it going. And thank you.


  3. Absolutely amazing!! I feel like I’m reading the first chapter of a novel! You’re writing skills are incredible. Can’t wait to read more! So amazed by your skills and your spirit everyday 🙂


  4. Wonderful job Ali. I am so proud of you for sharing your story and reaching out to others in need. I can’t wait until your next post!


  5. OMG Ali, I am so glad you are doing this. When I think of all the thousands of young adults who will benefit from your snarky wisdom :), I am thrilled to pieces. There is such a need for this, and you are clearly the gal to fill that need. And wow – you sure inherited your Mom and Dad’s literary DNA. You go girl!


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