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The Chemo Rollercoaster - Let me off already!


We are officially on the countdown to the end of treatment; only six weeks to go, making the 23rd of May a day of celebration.


My heart really only settled on this realization today, a whole week and a half after Sebby’s last MRI and oncology review in Brisbane. For a welcome change, we had a good scan, good results, and a high-5 from the team in Brisbane - awesome, yes? Or no?


My mind said yes, but my heart said no.


A predicament that's become all too common for me. Conflicting emotions, regardless of the news, wash over me as I try to understand it. I'm sure many oncology families and individuals go through this, reminded of their immortality and the fragility of life, a nudge back to some of the darkest moments already endured.


I know I’m not alone because others share their struggles through FB support groups. In my way of helping others, I share my experiences through my blog. Here’s an entry from my journal last week, illustrating how lost and confused I feel every 12 weeks, when Sebby’s fate is reviewed.


Why do I struggle to process good news?


When shit hits the fan, I feel in control,

calm, level-headed, and shielded from the blues.


Focused on finding a solution, there's no room for emotional confusion or alarm.


So why, then, do I feel numb to positive results? A search for peace, unachievable for this tortured soul.


I should be popping the bubbly, anticipating the inevitable dizzy assault that my body can't handle, but desperate to forget our fate.


The anxiety leading up to our quarterly oncology review is the same every time. The week before is full of sleepless nights, restless days, and a lack of focus. I just don't get it. I should feel relieved and exhilarated about dodging a bullet this time. But no. Nothing. I feel nothing.


Almost like I'm in disbelief; I don't feel like celebrating in case the turn of good fortune is short-lived. I’ve almost become conditioned to expect the worst to happen still, building up to disappointment in hope that it’ll shield me from the power of the blow, even though today's results suggest we're almost out of those woods.


Struggling to feel happiness like it never existed.


I guess this is all part of the grief. The harsh reality is that this shitty situation is the best we can hope for. Despite promising results this time, we're still dealing with a monster every day who is trying persistently to take our child. It's a battle we can't win, and the trouble is, we don't know how long the fight will last. We have the strength two never give up, but what toll will that take? It's not just grey hairs and weight gain; it’s heartbreak and soul destruction, breaking away tiny fractions with each new day.


Here's the thing – today, I feel great (even great enough to share a pathetic attempt at photoshopping my head onto a rollercoaster, haha). After time to process the emotions and realize once again that all we can do is take life one day at a time, I feel relieved that we can now look forward to ending treatment this time around on a high. Sebby couldn’t ‘ring the bell’ after his 1st chemotherapy treatment as it was cut short due to anaphylaxis (technically, he didn’t complete treatment). However, our little superstar has almost completed 68 rounds of chemo, and we all look forward to seeing him finish on a high.


For those of you who have or are fighting cancer, I take my hat off to you.


It’s hard, it’s brutal, and it is just so emotionally exhausting.


I know I don’t have cancer, but I sometimes feel like I do. Just like I said in ‘Boy of Steel,’ when someone in the family has cancer, so do we.


Keep fighting warriors, you are my inspiration xo


Boy of Steel, Little Sebastian's Big Miracle is filled with journal entries just like this. Some uplifting and some devastating. To order your copy, head to my website bookshop www.crystalleonardi.com/bookshop

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