I’m kind of a rock star….or….my tumor is anyway.

You know how every Grey’s Anatomy starts with someone coming in with some super rare injury, disease, growth? The Doctors get all excited and whisper and fight over who will get it. That shit actually happens in real life and I’m that patient!

Apparently I’ve been quite the topic of conversation at “Tumor Board” for the last 8 weeks or so. My cancer was extremely rare. No one really knows what to do with me. I went to a geneticist today, she’s curious and excited about me. I had some blood taken to see if I have Peutz-Jheger syndrome. She doesn’t think I do, and neither do I. I saw a radiation oncologist today. He’s not recommending any radiation but he is sending my tumor on the first plane to Houston, Texas for his mentor to look at. (I think it’s his way of bragging.) My tumor is quite the traveler. Then I saw my regular oncologist just for a follow up and leg measurements to check for lymphadema.

Two things happened at my appointments today that made me feel good.
1. The geneticist addressed my loss of fertility. She acknowledged that I am probably struggling more with that than with the cancer. That validated my feelings.
2. The radiation oncologist addressed that the hardest decision to make is to not do further treatment. He said that I am so young and they will be monitoring me so very close that he doesn’t want to jump into unnecessary treatment.

I feel very encouraged that they are being conservative and doing their research. Not one of my Doctors has seen a case like mine. They’re learning because of me. My body is going to teach them something. These Doctors are invested in ME.

I didn’t get many answers today and I feel like a human guinea pig with more tests and follow-up appointments scheduled. This will be my life for the next 5 years. This will be my new normal. I will become more immune to the feeling of walking into the Cancer Center. These appointments will become less stressful, I hope. Right now, it’s all so fresh. I left today’s appointments tired and reminded of what I’ve been through. I have 4 weeks until my next appointment, so no more worries until then.

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