not sick enough

Where I am now. Sarah Cannon called and said the drug company is hammering them with questions so treatment not approved yet. Docs at Sarah Cannon have approved but not the “sponsor.”

For them, they’d truly love someone with more extensive metastatic disease. The drug is designed for palliative care, not curative. But I’m hoping that for me with this little bit of disease on my left shoulder will be cured. But I am being categorized as metastatic,

I get it. They will spend tons of money on me and I won’t be the ideal candidate to sell their new drug. I am grateful of course if they enroll me.

Its a weird place to be; it’s a cancer that grows quickly but so far it hasn’t invaded major organs because we’re staying on top of it. But bc we’re staying on top of it, clincal trials is hesitant to take me. Catch-22. I’m trying desperately to stop it from spreading…three years of this!

They called yesterday asking about the half life of the radiation I’ve gotten. I handed phone to Dan who explained there was no “half life” involved in my radiation. Thank goodness I’m married to radiation oncologist,

Tentatively they’ve got me scheduled for next Wednesday April 15. They’ll pay for hotel on Tuesday night, so I guess treatment is early.😞🤔