“ Become empowered. Don’t assume your medical team knows everything. Spend time learning as much as you can about your diagnosis and believe that you always have options and that you will overcome this.
Akiva Zablocki is one resilient mAss Kicker! He is currently a social media consultant at Health2Social and a board member at the Children’s Brain Tumor Foundation. He is the chair of the Young Professions Group at the Children’s Brain Tumor Foundation. We were very lucky to find some time to chat with him about his personal battle with his brain tumor!
mK: Thanks for hanging out with us Akiva! First question… What/ when was your diagnosis? How did you find out about your diagnosis?
AZ: I had a Pilocytic Astrocytoma inside my brain stem. Over the summer between my junior and senior year in college I started to see double. An ophthalmologist sent me to a neurologist, who ordered an MRI. Within a week or so I was told, “I’m sorry, but you have a brain tumor!”
mK: What were your symptoms?
AZ: First, I started to see double. That was for a few weeks. Then, as the tumor continued to grow and press on my cranial nerves in my brainstem, I lost feeling in my left hand, had weakness and numbness on my left side, and started to lose some vocal cord strength.
mK: Why are you so involved in cancer advocacy? What organizations are you involved with?
AZ: When I woke up after 4 days in an induced coma post-brainstem surgery, I knew my life had changed. I had a lot of time to think over the next months in the hospital and rehab, and I knew that more needed to be done so that people like me can find the best cure and not feel so alone in the process. I started my own initiative with iPatchman.com and Health2Social, which is an initiative aimed at empowering patients to find better treatments. I also serve on the board of directors of the Children’s Brain Tumor Foundation.
mK: You must see a lot of inspiring stories! Who are your heroes?
AZ: Survivors turned entrepreneurs who start or take a leadership position in foundations that help others like us. Currently, though, my 17-month old son is my biggest hero. He just underwent a bone marrow transplant for a very rare immunodeficiency. He has endured high dosages of chemotherapy, and over 40 days in the hospital in the last few months, but has stayed the happiest kid I have ever met. He is my inspiration.
mK: Kids are amazing! So, what else motivates you?
AZ: Impacting others. My life has been full of unexpected obstacles that I needed to overcome. From my brain tumor to my son’s diagnosis, I have learned a lot and feel I can help others learn from my mistakes and triumphs.
mK: When was the first time you felt like yourself after your diagnosis?
AZ: I am not sure I ever felt like myself again, which I think might be the case for many people. That said, I know the exact moment I stopped feeling sorry for myself and overcame the perceptions that I am not disabled. I woke up from surgery without the ability to move or feel my left side of the body. My right side of the face was paralyzed, as well as my right eye. I could not walk, talk, or even dress myself. I needed over a month of acute rehabilitation just to be able to walk with a cane and live at home with an aid. Before I left for brain surgery, I was senior class president and very active on student council. I had disappeared for 6 weeks and came back a broken man. I had not worn real clothes or been out and about by myself. The day after I got out of the hospital, I dressed myself, combed my hair, and walked with my cane up to campus (my family and aid were not happy I disappeared on them). It took me so long to get to school and up to where the student council meeting was. I walked into that room, and with a low and very sore voice, I answered all my fellow members worried looks with, “I’m back!” From that day forward, I never felt sorry for myself again, I wore my iPatch with pride, and started my journey as iPatchman.
mK: Cool! What makes you laugh, cry, angry?
AZ: Again, I have to say my 17-month old son. He is the funniest kid I know, always happy and always wanting to make others laugh. It also makes me sad and angry that such a young special kid needs to go through so much at such a young age.
mK: What would you say is the most interesting thing you’ve done?
AZ: It’s hard to say, but I think it still might be the work I did in the Israel Defense Force in the late 90’s. I had more responsibility as a 20 year-old Sergeant than I would probably ever have again. I served as Senior Operations Sergeant of the Central Operations Headquarters, Israel Defense Forces (IDF). Exactly.
mK: Very different from what you are doing now! What was the toughest challenge you faced as a survivor? How did you overcome it?
AZ: Besides the way I learned to approach and see my disability, as I mentioned before, I would have to say it’s the nerve pain I still surfer from. It has had the largest impact on my day-to-day activities and medications don’t really control it. I have to adjust my lifestyle and make changes in my day to make sure it does not hold me back.
mK: Right! The key to “post treatment thrivership” is adapting to new situations. What is your guilty pleasure?
AZ: Peanut M&M’s – I can never get enough of them and if you knew how many I eat daily you might have me committed.
mK: HAHAHA! OK, hypothetical question for you… If you knew the world would end in 7 days, and you couldn’t tell anyone else… what would you do?
AZ: Love this question! The truth is I hope to be able to always be maximizing my time on earth like there was only a week left. But I am human, so I procrastinate like everyone else. I would probably make sure to spend as much time with my family and close friends and double up on my Peanut M&M supply.
mK: Of course Peanut M&Ms… ;P What do you like to do in your spare time?
AZ: What is spare time? I don’t follow…
mK: hee hee… right! So, what are you up to now?
AZ: As I mentioned before, my wife and I had to drop everything and leave our close family and friends in NYC and fly out to Seattle for our baby son’s bone marrow transplant (BMT). A BMT is a long ordeal and we have been here for 3.5 months so far, and we’ll probably here for a few more as our son heals and his immune system gets stronger. When he is well I will get back to developing the Health2Social initiative – this time with another survivor story to help guide me.
mK: Any advice for people or loved ones that get daunting diagnoses?
AZ: Become empowered. Don’t assume your medical team knows everything. Spend time learning as much as you can about your diagnosis and believe that you always have options and that you will overcome this.
mK: Tell us something about yourself that people probably didn’t know… anything.
AZ: First, I have two eyes. Yes, I am iPatchman, but the other eye is there under my eye patch. Surgery left me with double vision, so the only way to get around without seeing everyone’s souls following them is to wear an eye patch. So I don’t always wear it, and you might be one of the lucky ones that gets to see me without it.
Akiva Zablocki: Former sergeant, Peanut M&M addict, dedicated father, and driven brain tumor thriver! Thanks for hanging out with us!