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Phil Bacigalupi

33 years old
Grade III anaplastic astrocytoma

My name is Phil Bacigalupi, and I am a 33 year old elementary school teacher.  I was diagnosed with a brain tumor on May 19th, 2011 and had it removed on June 27th, 2011 and spent my summer recouping from having brain surgery.  My symptoms began over a year ago with migraines, blurred vision and a numb left hand at our house warming party.  I thought it was stress related from being overly social with all of our guests.  I went to the doctor, who came to the conclusion that it was just a sinus infection.  My symptoms became more and more frequent until a year later when my hand, jaw and leg went numb on the left side of my body.  When I stood up to walk, my leg did not work for about 10 minutes, and I found out later that I was having focal seizures.  I went to the doctor thinking it was heart related or maybe a stroke, but that I also wanted to see pictures of my brain because something wasn’t adding up.  He finally agreed that my symptoms seemed odd, especially for someone my age, so I had an MRI.  The next day on my lunch break I got the call that there was a mass was in my brain.  I went to the doctor thinking, “I’ll believe it when I see it.”  I saw it, and it took me about a minute to realize that that interesting looking thing on the screen was in MY head.  The lesion or mass or tumor or whatever you want to call it, was the size of a potato or avocado.  It was located between the motor and sensory cortexes on the right hemisphere of my brain.  That explained the loss of sensation and seizures on the left side of my body. When I saw the images of the tumor on the computer screen of the MRI, I got sick.  I got over it.  I didn’t allow myself to be scared again after that moment, hence my new nickname: “Tough as Nails” or TAN for short.  When it was removed I woke up in the hospital alive and well with lots of love in my corner.  I am also the proud new owner of the biggest, coolest scar of anyone I know in the shape of a giant question mark on the side of my head.  To me, that scar represents my survival, so I am proud of it and I don’t mind if people stare or ask about it, (it is a question mark after all). The only other time I got scared, other than when I found out about the tumor, was when I got a phone call from UCLA saying that my biopsy came back grade III anaplastic astrocytoma.  In other words, I have brain cancer.  The hardest part was breaking the news to my wife about the tumor, and then once again when I found out I had cancer.  She’s tough as nails too and I couldn’t have gone through any of this as well as I have without her!

Recuperating was a long road thus far, and I have come a long way from learning to walk again in the hospital.  I have now been cleared for all physical activity, in moderation, which is great news since I am such an active person.  I can’t wait to surf and snowboard again soon.  After the surgery, I was left with a numb left hand and a droopy let side of my mouth.  I am still waiting for the sensation to come back in my hand, but I am training it to play guitar again even though it can’t yet feel the strings completely.  I am also waiting for my lip to return to normal so I can speak and eat without it getting in the way.  Hopefully it will all go back to normal when my brain swelling goes away completely, but if not oh well.  I am just happy and lucky to be alive!

As a survivor, people say that I am an inspiration and I am glad.  To me though, the real inspiration has come from all of the things that people are willing to do to help in any way they can to help get me through this and keep my spirit “Tough as Nails”.  This hasn’t been an altogether bad experience for me though because I’ve never had as much positive energy surrounding me as I have ever since I found out about my brain tumor.  I don’t always know how to receive this kind of thing, but one weird side effect is that I catch myself smiling for no apparent reason at odd times like when I am using the stair climber at the gym or even when I am just taking my dog Jake for a walk.  I catch myself doing it and realize that I was smiling because I was thinking about some great person who went out of their way for ME to help me out.

I am now finished with radiation and am currently beginning my chemo therapy treatments.   It has not been easy on us financially because I had to spend my summer recuperating instead of working, and my wife Stacy had to spend her summer as my main caretaker instead of working.  Since finding out about the tumor, we have had constant hospital visits, many new prescriptions, lots of co pays, and all of the everyday expenses of life in general, which have taken their toll on us financially.  Our most recent realization was that my chemo therapy treatments combined with my other prescriptions will cost us well over $100.00 a month in prescriptions alone for the next 2 years.  We have kept a positive outlook on everything surrounding our lives since being dignosed with the tumor and then cancer.  The phrase on the T-shirt pretty much sums up our attitude about all of this because all of this has given Stacy and I a whole new appreciation for life!  If you are purchasing a “Don’t Worry Be happy T-shirt to show your support, we appreciate it more than you know.  When you see us smile at you when you wear it, I hope you know how happy it makes Stacy and I to know that you are wearing it because you care!

I know that there is always someone out there who is going through a tougher time than me no matter what, so I consider myself fortunate to be doing as well as I am. My heart goes out to EVERYONE in this fight.  Thank you my wife Stacy, my hero Dr. Liau at UCLA, Team TAN (which includes everyone who’s been there for me through this) and thank you to everyone for your support.

 

Don’t Worry Be Happy!!!
Much Love!
“Tough as Nails”
Philly