It is here again – December – the month that started like any other, took a turn and continues to linger. At times, it feels like a big inflection point – in other ways, it is far away. Too often I forget about all this and live my life like any other day – but then there are moments when the reality kicks in. Typically that is triggered by someone diagnosed with glioblastoma in my immediate vicinity. GBL is the worst brain tumor you can get and I don’t know anyone who has survived more than a year or two with it. Unfortunately, I also know a lot of people who are not here because of the beast this thing is (Beau Biden and John McCain also had it – in a much more public way)
At times, I get asked to talk to someone who was diagnosed or their close family member/friend was. “You are such an inspiration, you made it through”. Those are tough for me, especially if they are diagnosed with GBL. Newbies to brain oncology think of tumors as just that – tumors. Those of us who are entrenched in it know that it is a lottery ticket. I didn’t win – my draw is repeating and repeating while saying, every 3 months – I am still in the game. Kind of like very silent Squid game? And I have many tickets to play, others get one. There is absolutely nothing I or they did to get the tickets – in fact I think noone wants to buy into this lottery 🙂 It should go bankrupt. But back to it….. I was always very clear that I am public about this journey so will always talk to anyone about my experience, what I learned, what worked/didn’t, who was instrumental. I am just not very good in telling people that I got lucky and they didn’t. That’s all it is – luck!
I played my cancer card well this year when I jumped the line for booster and got ahead of the line with the immunocompromised. Technically, I am not but honestly, the vaccines sit there and get thrown away so no regrets on my part.
While on the boat, the crew played their playlist and Radioactive came on – my brain immediately went into “hey, this is your radiation song” which I blurted out loud. I forgot the impact it has on other people and how nonchalantly I just think of it – Not – “hey, this is the song I danced to at high school” more like “hey this is the song to which I was screwed to a table everyday for 15 mins, for 7 weeks with bunch of deadly rays flying around me trying to zap the tumor out of my brain”. Good thing I was laughing b/c others are sure like “aggh egh hmm, should we change it?” But thinking of it lightly now, 4 years later is much healthier for me. Why worry about something that isn’t here right now, at this moment – if anything I have much lower chance for this to be a problem as I am under constant photography of my brain – but others may not be so I am the lucky one (and my insurance will pay for it – they won’t for others believe me).
Anyway – hello year 4 of living with cancer, thank you to all my supporting friends and family – all is great so far and still here kicking its butt!