My mom's spirits are remarkably good. She's always been very pragmatic, and views the leukemia as just the next thing she has to deal with. She can still go about her normal routine, visit with the neighbors, run her errands, so she's happy. Her only modification is that she's going to the stores when they will likely be less crowded and have fewer children so she won't be exposed to as many germs. She usually visits with the grandkids every weekend, and we've continued doing that every weekend that they've been healthy. My older son is 14, so he has been great about helping out grandma with the things she wants to do around the house.
It's kind of funny, but my husband and I have been joking that the AML gives her something to do. She's rather social, so her weekly trips to the hospital are a time for her to catch up with all the nurses and give them advice on their lives. Up until this month, she went weekly to have blood drawn to check her counts and meet with the dr or nurse. If her counts were low, she would get blood at the same time. This month they made the decision to move to appts every 2 weeks, so she would be in daily the week of her shots, and then once 2 weeks after that for blood count check. They indicated that she knows how she feels, so if she starts to feel extremely tired or 'wobbly', her hemoglobin is low and she's due for blood. I have to watch her, because her AML was diagnosed as a part of regular bloodwork in advance of a colonoscopy. Her Hg was so low, that the nurses said they'd never seen a count that low on someone who was conscious (it was 4). She'll say she's fine, and then next thing you know we're in the ER.
She is holding her own, and she is glad that she did not choose the aggressive chemo. I can see that her highs aren't as high, and her lows are lower, but at 5 months after her diagnosis, that's still good. She was high risk in every category on the IPSS at her diagnosis (negative cyto, all cytopenias, high blast count), and her AML progressed through MDS, rather than de novo, so things were not looking good. She says that the statistics don't apply to her, and to a certain extent she's right. No matter what statistics you read, each person is an individual and will have their own outcome. I'm a strong believer in mind over matter, and her positive attitude has helped her get this far.
I hope your dad continues to respond to the Vidaza and the transfusions spread out. The drug seems pretty well tolerated, so if he can deal with the 'back and forth', it's worth the trip.
Tricia
