Monday, April 2, 2018

Glioblastoma is a really aggressive disease. I fight it aggressively too.

Sometime in the middle of 2017, my Glioblastoma buddy Ron said this comment while we were exchanging notes about our ailments over a phone conversation:
"Glioblastoma is a really aggressive disease. I fight it aggressively too." 
That is a sentiment I totally agree with, and have adopted as my personal motto since I understood the significance of my diagnosis soon after learning about it in November of 2016. I have been living that statement the way I interpret it ever since then. 

Ron died due to Glioblastoma related complications in the middle of February 2018, two years after his diagnosis. 😢

Obviously, fighting Glioblastoma aggressively didn't work out for Ron. Makes me think what "fight it aggressively" meant to him, and what it means to me. 

From the little I gathered about Ron's treatments through our phone conversations and facebook interactions, I think he limited his aggressive fight to within the arena of conventional medicine's options. He believed & trusted his Oncologist's expertise & capabilities, and went the distance to follow her advice - in terms of increased Chemotherapy dosage or trying out new type of radiation therapy treatments. In the last few months before his death, Ron had gained a lot of weight. So I am guessing he did not try any of the diet and lifestyle changes that I am learning recently to be of value in fighting cancer naturally. 

My interpretation of being aggressive with my cancer has been to research intensively to find a thing that could help in my fight and take it to as extreme an end as possible. Here are a few things I have identified as useful in my fight with Glioblastoma:
  • STANDARD OF CARE TREATMENT : Follow up on all the treatments prescribed by the medical team with no exceptions. 
  • BEING OPEN ABOUT MY CANCER : I have been very open about my condition right from the initial surgery and diagnosis. I had lived my life till then being very open about the important things in my life - posting on social media - about important and non-important stuff on a regular basis. I wasn't going to change the way I live my life just because I had a brain tumor and was diagnosed with a terminal cancer. This has helped me go about my life in a normal way - even with making drastic changes in my life - for example: having wires hanging from my head, or completely altering my diet, etc. 
  • OPTUNE : In my view, Optune is the only hope GBM patients have. Because of that, I have decided to wear Optune always forever. On a typical day, the only time I am without Optune is EITHER (a) the 15-20 minutes break I take from Optune to shower, OR (b) the 1-5 hours break from Optune I take to go for a short/long run, shower after the run, and put the Optune arrays back on. All other times, I am with Optune on. I go everywhere with Optune on. I do everything with Optune on. If Optune makes it difficult do do something - for example: go away to India to visit my family for a few weeks - avoid doing that. 
  • ACCEPTING THE POSSIBILITY OF MY EARLY DEATH : It has been my experience that dealing with one's own mortality is a very tough task. Because of that reason, it is very easy to ignore the threat and get oneself lost among the mundane stuff. If I let myself off on this task, it is quite likely my family will wake up one fine day to find me dead, and also that they are totally unprepared to handle all that that event implies - both emotionally & financially. Now that I have put in a lot of time getting this blog into a decent shape, this blog will help me be in the saddle always in the constant and never-ending fight with cancer, and to do what it takes to prevent/delay that eventuality. Also, it is likely to help my family get prepared for that eventuality.
  • DRASTIC CHANGES TO DIET : A work in progress item. Anything that is shown to encourage tumor growth goes out of my diet. Anything that is shown to help prevent tumor recurrence stays on in my diet. From being someone who had two cups of traditional south indian coffee with milk and sugar a day, I went to having my coffee black almost over-night with no regrets whatsoever. After a lifetime of having rice as the staple of my diet, I have dropped rice altogether. And so on.
  • SUPPLEMENTS : Another work in progress item. So far I have incorporated raw garlic, circumin, and green tea as daily supplements. Will add more items as I learn about their benefits in suppressing/preventing tumor growth.
  • RUNNING : Regular exercise helps build immunity, and prevent tumor recurrence. So I will run, run, and run marathons, and more marathons, and keep running.
I will continue to fight Glioblastoma aggressively by researching intensively for things that will help me in my fight, and will take to as extreme an end as possible. All with the hope that I will escape the fate of early death that Ron and most Glioblastoma patients met/will meet.

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