Uncertainty is probably one of the hardest things to deal with. Especially when you have a rare disease. Will this treatment work? Will I still be here in a few months? Am I eating the right things? What is causing this sudden pain in my stomach?

When I got my cancer diagnosis, it seemed like I got sick from one day to the next. Of course that is not true, but it all happened so fast. Thursday afternoon I was taking the bus home from work, on Friday I went to the doctor and the ER and Saturday early morning I woke up in a hospital bed when they were steering me into the IC unit. Life can take unexpected turns suddenly and fast…

When something unexpected and earth shattering happens, you have two choices: 1) retreat to a corner and give up, or 2) pull yourself together, step up and face it head on. For me there was only one choice. I’m not known for giving up without a fight. Ask my team mates who have sat through multiple three set tennis matches because I didn’t want to concede. Did I always win? No, but at least I tried.

If I have a choice between life and death, I choose life! I want to make plans and grow old with my wife. I want to see my son grow up, graduate and drive a car (in no particular order). So, how to begin a journey … when you have no idea where it’s going to end? After 6 months of wondering “why me?”, I realized that the first step on my journey would be this: be thankful, be positive, be grateful, be happy, try to live by the day and every day.

 

Every time a CT scan is made, roughly every two months, you tell yourself not to get your hopes up. You know what the odds are of the treatment being successful, but still you keep some hope that a miracle has happened …

The first time I had a progress scan was after surviving two months of the worst chemo possible. Inexperienced, I was really hoping something good had happened … no such luck. Chemo had done nothing and we had to look for a different treatment. The day we got the news was shortly before our Sebastiaan’s (our son) 1st birthday.

How do you celebrate such an event when in the back of your mind you realize that this could be his only birthday you’ll experience? That you might never see him on the playground, go to school, reach puberty or drive a car. Let alone graduate, meet a nice partner, maybe get married and maybe have kids.

After receiving the bad news, Martine drove us to San Francisco where we went to our favorite bar, Mario’s Bohemian Cigar Store Cafe on Columbus Avenue in North Beach. There we sat in silence looking out over Washington Square and the busy Italian Quarter. It was good to see people going about their business as normal. The world hadn’t changed, it was still the same. Only, what was life going to bring us?

We soon found out that we weren’t alone during this difficult time; a lot of family and friends came to celebrate his birthday and to support us. Although we didn’t talk much about the situation and Sebas was the center of attention, the nagging question remained in the back of my mind and probably of others. Would this be his last birthday for me?