Many people have been asking me about Ana lately so I thought it was high time for a quick blog update even though we know NOTHING. Well, that’s not exactly true. I did hear from Dr. Yamashiro on Friday (via email) and he said the full testing for the ALK gene was done and Ana’s tumors are definitely ALK-negative. This rules out using the drug that’s proven to be very effective for shrinking IMT and is definitely a bummer but not really unexpected. This is the third time she’s been tested for ALK and the first two tests were negative. I’m learning that bad news hits a lot harder when you’ve gotten a nibble of good news first (e.g., “this is the kind of cancer that almost NEVER recurs and NEVER spreads”)
Ana’s next CT scan is on May 2nd and then we’ll hopefully get more good news that the lung tumors are smaller. She’s been taking a high dose of Celebrex for a couple of months now and her anti-rejection medication is still low (in terms of dose). So, we’re in a holding pattern until May, but I’m not hugely worried. Ana is healthy – she looks healthy and appears to have gotten even taller. Dr. Martinez seems very unconcerned about the low dose of tacro. She had her last labs drawn on 3/7 and doesn’t need the next ones drawn until 4/18 (but I’m taking her sooner because I’m a worrier).
So there’s not a huge sense of urgency from the doctors which is putting me at ease. I’ve seen them spring into action when they’re worried and I really trust their judgement. I think April will be pretty uneventful and I love that! Jim and I are focusing on getting healthy again – eating better and exercising. We both want to lose some weight before our big trip to the Bahamas in June.
I think May will be a pretty big month. Ana will have her scan, she’ll turn 13 and I am really hoping (and praying) that there will be no news or good news in terms of what’s going on with her tumors. My book is also coming out in May (and I’m turning 43) – my fingers and toes are crossed for continued good news. The synapses in my brain need time to recover from the latest scare.