Pneumonia Revisited and New Treatment Considerations

My breathing is better this morning, so I seem to be responding well to the antibiotics. I have to continue on them and then get the chest xray redone next Wed. I'll see the doc either Wed or Thurs and we'll make the final decision about the new treatment. Treatment won't start until the end of next week at the earliest, but probably the following week. I would have been more worried about the delay, but I've been using less pain meds the past couple of days, mostly just in the late afternoons and evenings, so the pain is subsiding some on its own.

The new treatment will for sure be VP-16, but my doc is still investigating using it as a single agent vs mixes. Some mixes with VP-16 are very aggressive, meaning they will be very hard on me, especially starting out with low blood counts. He said I have a decision to make about how aggressive to be. An aggressive approach will probably mean about 6 months of in-and-out-of-the-hospital, poor quality of life time. It's possible that after that I could be in remission, but there's no way to predict that because I don't fit any of the statistics anymore. My low counts, many relapses, and previous overreaction to drugs are not in my favor. My nurse Ann says I have to consider that an aggressive approach may mean that I'll go into the hospital and then at some point, not be able to come home again.

My immediate reaction to the decision is to go with the approach that has worked for me for so long, and give my own body a chance to defend itself and recuperate by using the less aggressive approach. The other alternative seems too much like a desperation move and I'm not desperate, nor I have I ever made good decisions from desperation. Blasting my body with heavy chemo does not seem like a good choice to me. But the investigation and thinking still continues.

In the meantime, I'm on daily Neupogen shots to keep my WBC way up while fighting the pneumonia. We're still watching my platelet count which went up a little from 11 yesterday to 13 today. We may recheck tomorrow and I always have the option of popping into the hospital over the weekend for a transfusion if that seems necessary. My doc doesn't want to transfuse me unless my platelets are under 10 or I'm having bleeding. He's concerned about me becoming "refractory" (immune) to platelet transfusions by getting too many and then I'm in trouble. It's been 10 days since my last transfusion, and I've been holding my own. We're hoping the numbers will go up by Monday instead of down.

Oh yes, it seems that VP-16 is likely to make me lose my hair, so I'm getting mentally prepared for the Sinead O'Connor look. I think I'll start collecting goofy/rude hats. I don't think I'm the stylish wig type. Too bad I have such a lumpy, scarred head. Clumsy childhood accidents and lumpy genes, I guess. I'm not sure I'm into showing off that place where I got 14 stitches from a diving board accident, unless I also wear an eye patch and go around with a parrot on my shoulder. Yo Ho Ho...

Pneumonia

Well, I guess I wasn't getting enough attention by not responding to treatment and having my abdomen blow up like a balloon. I've been on pain meds for a week, awaiting the as-yet-not-totally-decided new treatment which was supposed to start tomorrow. I know it is going to involve Rituxan and VP-16, but the other ingredients to the mix were still under discussion.

That is until my shortness of breath finally even got more than I could take without wondering (I have a high tolerance for discomfort, I guess) and my doc sent me for a chest x-ray. I have pneumonia, so treatment is postponed until next week at least. I am not a happy camper. But I don't really feel all that sick. Just achy. Time for more Darvocet.

Pulse ox was okay, no fever, WBC of 4, so I get to ride this one out at home on 2 antibiotics, at least for the time being. More news tomorrow after I see the doc again.

Pain Problem

These last few days have not been much fun. I've been having a lot of abdominal pain since last Wednesday. On Friday morning I talked to my doc and he said to stop being stoic, let someone else do the driving and take the pain meds. So I finally did that all weekend and now I'm getting ready to go in to get my counts done.

I think this chemo is not working at all. I'm sure the pain is from the nodes. I have an ultrasound of the kidneys scheduled for tomorrow and then I meet with my doc on Thursday morning to come up with a new game plan. The frustrating thing is that if my counts aren't high enough, that may delay any new treatment. I guess we'll just have to wait and see.