Karen just got off the phone with Nancy. My blood count is a mixed bag. The reds are up over a point each (yay!)… they couldn’t get a good platelet count because they were clotted (I guess this happens all the time and is common, but has never happened to me), but they could tell they were OK. They may ask me to test again tomorrow just to make sure. Nancy is checking with Dr. Bigler, who is off today and back tomorrow. The other thing is that my white count is down to 1.9 and my neutrophils are 950. We were told my white counts could go down with the start of maintenance. They have. This is another reason they may want to test me again, to make sure they don’t go lower. We (my doc, Nancy, and Karen and I) weren’t sure how I would respond to this, to maintenance. The thing is, not many people have this kind of leukemia so they aren’t sure either, there isn’t a big database of info, besides the fact that everyone is an individual and responds differently, hence another reason they may want to test again. But, for now anyway, I have to be careful again. I’m not in the danger zone of neutropenia… I can still fight things off. It’s just that Nancy said I need to not be around anyone who is sick and we need to make sure we wash the vegetables really well before I have them. We don’t know if my numbers will come back up, if my body will adjust, or if they will stay down in this zone. We don’t know any of that yet, especially since I just started. It’s possible Dr. Bigler will want me tested a couple of times a week again just to see what happens. It’s possible I will have to take neupogen again (for how long or how often I do not know). At this point we don’t know. Only time will tell how this is going to work. The good news is that because my red blood counts are up my energy is getting better by bits all the time. That is a good thing. I don’t feel the difference in the white counts, but I definitely do in the reds. I knew they were probably up a little. I can feel it energy wise.
So that is that…. I may not get another blood test until Wednesday next week. Though that seems like a long time away since I want to know if my neutrophils are still falling. If they get below 500 I’m in that neutropenic zone where I need to stay away from people, not have fresh fruits and vegetables again, etc. The other thing is that next Wednesday I have another bone marrow biopsy. Not looking forward to it, and yet I am. The procedure isn’t fun at all, but it will be good to know where I’m at. Knowing where I’m at, with all of this, helps. Knowledge IS power.
Good news is that I didn’t react to my methotrexate this time. No hives afterward, like last week. I took the recommended Zyrtec beforehand. So my maintenance regimen is good to go. Mercaptopurine pills every day, methotrexate shot once a week, 15 days of ATRA every three months. That’s a good thing, no real reaction to any of it. Getting a reaction always worries me since I’ve had med reactions to things throughout this process. It gives me anxiety so now I can relax a little about that. Now we just have to get through the bone marrow next week and figure out how my numbers are going to be, etc. One thing, still one day, at a time.
Hope everyone has a great halloween this year. We have some plans to go to a friend’s place to do pumpkin carving on Saturday. Should be fun. Living life… I want my numbers to stay up enough so I can do a little living of life. Let’s all hope that the numbers don’t go down any more. Let’s hope they settle in or even go up a tad. That would be great.