A recent conversation reminded me that I started this blog in 2013 as a place to share my experience of living with a Rare Disease/Cancer. I guess in the beginning I thought i'd likely die from ECD and I wanted to leave a record of those last few years for posterity sake. Spoiler Alert!!! Didn't die! So I stopped posting because I'm really tired of being sick, of being defined in some ways by my sickness, and because its all just frickin depressing.
So I've spent the last few years doing my best to ignore the disease. The thing is cancer and the treatments used to stop it often have very obvious side effects. For instance my current treatment plan calls for me to be on Cobimetinib, a wonderful MEK inhibitor created by Roche pharmaceuticals. For three weeks a month I get sores in my mouth, my skin breaks out on my chest and face, and I get insomnia (oh and let's not forget the trips to the bathroom).
In the beginning when you have first get diagnosed with cancer there's lots of sympathy and understanding about these things. Seven years later, not so much. Cancer fatigue starts to wear people out, so I've gotten to the point where I keep most of my issues to myself. In fact most of the people I've met in the last few years don't even know I have cancer.
How's that possible with side effects like these you might ask? I just tell people the rash is a side effect to a medication I'm taking and they don't ask for more information. Guess thats one of the advantages of getting older, everyone is on some drug or another.
Sometimes I wish there was someone around who understood. Like last week when I had really painful sores in my mouth for 5 days it would have been nice to know someone else understood what thats like. But the more I talk about ECD the more it controls my life, so lets all just pretend I'm perfectly healthy. And the next time you see me let's play a game I play every day called, "Pretend Brad doesn't have Cancer". It's a fun game where I get to be normal and you don't have to hear me lie about how great I'm doing.
So I've spent the last few years doing my best to ignore the disease. The thing is cancer and the treatments used to stop it often have very obvious side effects. For instance my current treatment plan calls for me to be on Cobimetinib, a wonderful MEK inhibitor created by Roche pharmaceuticals. For three weeks a month I get sores in my mouth, my skin breaks out on my chest and face, and I get insomnia (oh and let's not forget the trips to the bathroom).
In the beginning when you have first get diagnosed with cancer there's lots of sympathy and understanding about these things. Seven years later, not so much. Cancer fatigue starts to wear people out, so I've gotten to the point where I keep most of my issues to myself. In fact most of the people I've met in the last few years don't even know I have cancer.How's that possible with side effects like these you might ask? I just tell people the rash is a side effect to a medication I'm taking and they don't ask for more information. Guess thats one of the advantages of getting older, everyone is on some drug or another.
Sometimes I wish there was someone around who understood. Like last week when I had really painful sores in my mouth for 5 days it would have been nice to know someone else understood what thats like. But the more I talk about ECD the more it controls my life, so lets all just pretend I'm perfectly healthy. And the next time you see me let's play a game I play every day called, "Pretend Brad doesn't have Cancer". It's a fun game where I get to be normal and you don't have to hear me lie about how great I'm doing.
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