What We Learned at Mayo

We went to Mayo three weeks ago. I’m delayed in writing a follow-up, because it feels like there’s not much to write about. We had a great trip (turns out a 10 hour road trip doesn’t feel long when you leave your toddler at home), and really liked the oncologist and urologist we met with. We found every interaction to be professional, caring and efficient. However, they didn’t have a magic pill for us. While we knew this was likely, it was still deflating. We had really hoped there would be a new treatment or therapy they would recommend for us.


We’re still glad we went to get a second opinion. So, what did we get from our trip to Minnesota? We were able to hear from an oncologist who practices only in the field of sarcomas that he would have done everything the same. On top of that, he shared that he is amazed that this current treatment Tony is on, Xalkori, is working to lower the activity of the tumor and keep Tony pain-free. He used the terms “low grade” to speak of the tumor, and that he believes there is lower risk of metastasis. We heard from the urologist that he would not recommend surgery right now. Hearing these physicians say that we should keep on with what we’re doing gives us some peace of mind. It allows us to push forward with this current, indefinite treatment.

I know in certain, chronic forms of leukemia you can be on treatment for years. However, I don’t know anyone who lives with cancer the way Tony is right now. The biggest adjustment for us has been making the shift from focusing on intense treatments, to learning how to get on with life while still living with a cancerous tumor. Again, we’re trying to find a new normal for the present, and have hope for the future.



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