These are the questions I get most, so here's a handy answer guide.
How are you feeling? Generally fine. The tumor is in a spot that tends to generate pain if I work out too hard and since my diaphragm is being rudely pushed, I don't have the breath capacity I used to have. But overall, not too shabby.
Do you have a treatment plan? Not yet. My surgeon is still trying to figure out the best approach to getting out the tumor, hence the involvement of UCSF, which has advanced vascular surgical expertise.
Why is it taking so long? Because I have a very rare cancer, they can't figure out where it's coming from and they say it's very slow growing and has likely been there for years.
What is sarcoma what is epithilioid sarcoma what is the standard treatment is it curable what is the next step is it genetic and which genes? There's a handy thing that's been around since the 90s and it's called Google. Please don't rely on a person facing mortality to explain the science of their disease to you.
Any updates? This blog should answer that question, which is the one I get most. If it's not here, it's likely that I don't have news, or that I am still trying to process it and not ready to share. Please don't take offense to that...I probably take a bit longer than most to take in reality.
Do you need anything? Normalcy and a laugh at my dark cancer jokes. And to spread the word about this blog so that I can apprise people of my progress this way as I try to grasp it all myself. Oh, and tell me I'm pretty!
I do appreciate the questions and the check-ins. It means I've done a good job (and gotten lucky) at surrounding myself with people who care and want to act. <3