The "Why Me?"


SS is so strange. You can be perfectly healthy and bang! Or, you can be a pack a day cig smoker who lives on taco bell and bang!

During treatment, I like most of you saw the gamut. I lost faith in many things by watching amazing children die slowly for no rhyme or reason. It was torture to watch them endure suffering on a daily basis as slowly they turned gray, weakened, and eventually were gone...

This week marks the birthday of my friend Kim who died in her early twenties of ES. She started about the same time as I did and we instantly hit it off. I became close to her husband and considered her like a sister. She was truly "angelic."

When she died, I couldn't believe it. I had seen so many pass from my support group, but why Kim? Why Ian? Why not me? In my opinion these were good kids that deserved to live much more than I did. Kim was looking forward to having children one day and was still going to school when possible. WHY KIM?

The why me is an easy answer for me now. It's obvious, but I had been searching for deeper meaning. The answer was always there, I just didn't want to acknowledge it.

The answer is that our lives are random. The outcome and luck of the draw is as random as a scratch off ticket. Kim died, I lived, no reason, just bad cards.

I love you Kim. Thank you for making me smile everyday.



Here is an attempt to support your idea with some biology:

We know that synovial sarcoma normally comes with the translocation t(X;18) which leads to a mutant protein also called fusion protein SYT-SSX (2 normal proteins fused together). The expression of this mutant protein was found to lead to synovial sarcoma only in specific types of cells (immature myoblasts) in a study done by University of Utah:


By the way, if you ever wondered, a translocation is a mutation where 2 chromosomes exchanged parts.

Note that it is believed mutation is the ultimate source of variation in nature. Without variation there could be no evolution so mutations are of great importance to evolution:


Unfortunately mutations are random. Sometimes they do no harm or add something to diversity which is good but sometimes they lead to cancer or other problems :-(

And although, cancer predisposition syndromes or carcinogens increase the rate of mutation and the likelihood of getting cancer, these are not required for mutation or cancer to occur. Did you know dinosaurs could get sarcoma?


How well a cancerous cell thrives in its environment likely depends on its unique DNA which is like its unique set of skills. So each patient start the journey with a unique challenge to face. This is just my guts feeling, I do not have a study to support this idea.

In conclusion, it looks like the wrong mutation in the wrong cell got us in this nightmare. But we have to believe that we are the sacrifice for the better good because mutations are necessary for life as we know it, which is as diverse as it is because of random events. I don't know about you but it makes me feel better to look at it this way...


Why not me … There are a lots of shitty things that can happen to you in this world and sarcoma is far from the worst. Good friends like that reminder you what life is all about and how to live.

Elodie, thanks for the scientific version I found this and links interesting. Weird thinking were mutants. I also follow the thread of why didn’t my immune system deal with this. Cancerous cells are common in people but your immune system usually deals with it. Why did my immune system fail when my tumour was small and insignificant, and why did my body feed this mutation?


Gary, as you did, I read many claims that your immune system should kill your cancer if only it was efficient. But I don't see any study to prove this in the case of synovial sarcoma. Why would your immune system want to fight cells that are parts of yourself? Why would it consider them enemies? Look at the NIH immunotherapy trial for synovial sarcoma. They are trying to teach T-cells to attack cells which present the antigen NY-ESO-1 (like synovial sarcoma cells). But this antigen is actually part of the normal cells of the testis. And it was chosen because it is only found in the testis so it makes it a good target. After all you can live without your testis working properly... It would be crazy for your immune system though to want to attack this antigen without being told to do so...