Point me in the right direction... im in a wheelchair!

Greetings from London, it  has been quite a chilly reception, but nevertheless it is good to be with family and friends. I cant believe that last time I was here I had a 2cm tumor embedded into my my brain, and as I sit here now, 70% of that tumor has been removed.... I knew I had lost some weight, even if it is a few grams. From where we left off in Palo Alto, we went and saw Dr Harsh last Friday where he looked at my scar and assessed my recovery. He was happy with the state of my headaches and gave me permission to head over to London, UK, for the rest of my treatment.

I went through some invaluable lessons while I was in the US, and some were more hard learned than the others. Last Tuesday I hit the proverbial wall, it was 4 days after brain surgery and I considered myself to be on the road to recovery... the headaches were becoming less and less painful and I was in high spirits. When you go through brain surgery, you learn to not take things for granted. I woke up on the Tuesday morning with a painful searing feeling behind my eye, I can only compare this to someone getting a red hot poker and trying to twist it through the back of your eye, and once that pain begins to register with your central nervous system, it is then followed by an excruciating headache. That is how my Tuesday started, and I was not in high spirits. I tried to brush the headache aside by watching some TV and having a skype session, which was not ideal as I forgot to pay attention to the nausea slowly gathering momentum form within. It was becoming increasingly hard for me to keep food down, and I had already had one occasion of late night wretching.


My parents registered that I was going to be unplayable as I was having difficulty putting some food in my tummy and my refusal to awake from my slumber. I had been warned that I would only truly feel the effects of surgery 3-4 days after surgery, but seeing that I was out of ICU in just one day, I felt I was ahead of the curve. In order to try keep the vicodin from eating my stomach wall, my parents and I forced some oatmeal down. This would be a rued decision later on in the day... you can foresee my demise. My headache gradually began to worsen along with my nausea, but I continued to fight the pain and turn down any nausea medication. Here is some advice if you ever find yourself on  prescription medication, take your pills if that is what it says on the script... a neuro surgeon professor knows better than I do.

As I lay on my bed, I had to call out to my mother frantically, the oatmeal that was "lining" my tummy had failed and I began to vomit. I cannot explain the pain you go through when you are trying to hold back a vomit which exerts even further pressure on your brain that is already under duress. Eventually I just had to submit, the affects of surgery had won this short lived battle. My mom came rushing towards me with a shopping bag in hand, and it was an all too attractive offer. After 10 minutes of wretching, it was finally over and the frantic worrying on my parents part began. They flew around the hotel room looking for cellphone numbers and emergency lines, and quickly closing any current skype calls... I am sorry for those of you who had to see my stint of vomiting. 45 minutes later we found ourselves in the hospital... yet again. We quickly saw Dr Harsh, followed by a battery of bloodtests, some more scans and some neurological tests. By this time I am in a wheelchair and not feeling great. Fate is a funny thing, but I needed to be in that wheelchair in that hospital to learn my most important lesson. I sat with my head in my hands, to weak to move and too tired to speak. I slowly got wheeled around the hospital from station to station where they performed their necessary tests. I slowly begin to lose interest in where we are going and I become very disillusioned with where I am going, I am 24 years old, I am not supposed to be bound to a wheelchair, recovering from brain surgery from a tumor... that wasnt my calling... or was it?

As I got wheeled around the hospital I looked more and more like a cancer patient, the colour begins to drain from my face, and slowly my complexion becomes more similar to that of a sheet and less like a human. I slump further down in my wheelchair as the burden of the challenge begins to weight heavier on my shoulders and my parents attempts at luring me out of this state are becoming less and less promising. Slowly the gravity of my battle begins to be identifiable, and my climb to the top of this mountain seems sheer. Where did my life go wrong, that this had to happen? These were the questions I was asking myself, the questions I needed to ask in order to get some clarity and some perspective, because as I was being wheeled around I was being grouped with other people who were in wheelchairs, who also had shaved heads and a very pale skin complexion. What i failed to recognize then was that I was being sat next to the people who were terminally ill with cancer, and they were all talking amongst one another, finding out each others prognosis. They saw me get wheeled into their group, at first it was just IV drips attached to their chairs, and slowly they became more and more interested in this newcomer, someone they hadnt seen before, someone who was suffering their first small defeat of cancer. They asked me why I was there, and I could slowly muster the words, brain tumor... and just as quickly as the words escaped my mouth, did I realize that I needed to keep them to myself. Because they looked taken aback, the men who sat around me, who were jokingly sharing stories minutes earlier were silent, grim faced. These were older men who hadnt imagined that a 24 year old would be battling cancer, and my grim response had dulled their day. That wasnt up to me, and I had failed myself.

These men didnt need to know my problem, and I was gravely disturbed by my need to tell them. They were fighting their own battles, and they didnt need to be further weighed down by me. I appreciated that they were concerned but it seemed like their problems were far greater than mine. They were the ones with chemo bags attached to their wheelchairs, who were suffering crippling pain and sadness at their terminal disease. It was not the other way round yet there I sat, hunched over in my chair. I was personifying this battle with cancer and it was then that I decided it would be the last time. I was not going to let me lose this fight, and I could not let anyone else think ever " he must be fighting cancer", because on  that Tuesday I looked like a cancer patient, yet in my head I knew and I still know I am not a cancer patient. It still has not sunken in, and maybe it is stubbornness,  or I have a strong constitution, but the pills havent affected me as the doctors said, and the surgery was intense but I was ready for the battle. More than surgery and all the bloodtests, poking and prodding,  I learned more on that Tuesday because of those men who look terrified when I let them know a 24 year old had brain cancer, and I feel I ruined their day. I dont need to feel bad for myself or feel down, that is a terrible thing to do. There are people out there fighting much steeper battles. Of course my fight is immense, but I have not accepted for one second that this will beat me. But these men were in their last rounds, and I could see it in their eyes. They looked at me with the same look that they looked at their fallen friends, and it left a very bitter taste.

You have to be the person you want to be, I dont want to be seen as that cancer patient, I want to be seen as the guy who is fighting, and even when he is in that wheelchair, he uses all his energy to get out of it.

That Tuesday was a defining day for me, and I took a lot away from it. I did get better, I was put onto steroids that toughened up my immune system, and my nausea slowly dissipated. Slowly i was able to stomach more and more food, and as I sit writing to you now, I am on the couch in my sister and brother in-laws house, having just played with my one month old niece. It has only been one week since that Tuesday where I truly felt like I was dying, but more than anything it showed me what I needed to do to truly live.