A Glimmer of Hope
Jim and I spoke with Dr. Yamashiro yesterday and he seemed pretty optimistic that chemotherapy could work to slow and even stop Ana’s disease progression. The negativity I felt when I posted on Friday – the bleakness and certainty it wouldn’t work – was apparently coming from me and not from him. It was based on our first experience of chemotherapy with Ana, and it not working at all.
She had one enormous tumor and not a dozen smaller ones. It was also fairly slow growing (the original tumor). Ana’s current tumors are in an active growing phase at the moment – scary, yes – but just the kind of thing that chemotherapy inhibits. This is another reason Dr. Y is optimistic chemo will work. I think I was also very reluctant to move forward with chemotherapy because Ana was so upset about it (vast understatement). I couldn’t bear putting her through it again when I felt there was such a small chance that it would work.
However, based on our call yesterday, Dr. Yamashiro feels it’s an excellent option, and I have no reason not to trust him. He’s been right about everything so far. His discovery of the novel gene fusion that lead to the use of Jakafi is what kept her stable since June.
We’re not ditching the bucket list because her disease has advanced so much, we would be fooling ourselves if we didn’t take it seriously. However, please don’t give up your Christmas presents to fund Ana’s wish list (as one person did – I just refunded their money). If you feel you want to donate, and you have the means, then donations are welcome and will be used to give Ana some of the things that she really wants on a bucket list that is still in progress (items recently added include riding on a zip line and seeing Black Sabbath and/or The Arctic Monkeys in concert). So, you see, I can accept gifts and so can Ana, but not if it means no presents for you (or your family) for the holidays. We love presents in this house.
Now, having said that, we did get some further bad news. They discovered two additional lesions on Friday’s scan. They’re both on her liver. This is absolutely terrifying to me for obvious reasons. It also highlights the importance of chemotherapy because we need to knock this cancer out of her body systemically instead of one by one (which has kind of been our approach up to and including her liver transplant). It seems to be popping up everywhere. Ana’s biggest heartache with chemo right now is losing her hair. So, I’m determined to try cold cap therapy to see if we can save her hair. This isn’t cheap (roughly $500/month) and not covered by insurance. So, the money we’ve raised so far will help us a lot. You can read more about cold cap therapy here.
I hope I can obtain approval from Dr. Yamashiro for cold cap therapy and that Ana can tolerate it. I think it will make the awful process of going through chemotherapy…again…much easier for Ana to bear.