I will start with the preverbal good news first and see if I can get some lipstick on this pig.
My white count has suddenly jumped back up to the normal range after being severely low and was putting me at risk for a serious infection. For that I’m grateful.
My red blood cells are slightly higher (less anemic) with a hemoglobin of now 10. I can tell the difference where I’m not short of breath as I’m sitting or tachycardic, but with exercise I am.
I had a full body MRI which showed no boney cancer lesions. I had one lesion on an MRI prior to my stem cell transplant so either that is better or the first one was an artifact (not real).
Have you ever had one of those experiences where you get some really bad information and then the next day you don’t believe it is real? Well, a week or so ago, when I got a glimpse of my bad protein and saw that it was unchanged (actually a little worse) than before the stem cell transplant, I had a horrible feeling as I expressed here so clearly. But I wanted to hear it from the “horse’s mouth,” meaning in this case, my oncologist. Well today, the horse spoke. I was not delusional. It may very well be that the stem cell transplant, with which I had hoped of reaching almost a cure, did nothing for me, except to make me suffer horribly (including all the complications I had afterward), costing ½ million dollars, and now putting me at quadruple risk for getting other cancers (a standard risk of stem cell transplant). I am also not a candidate for another stem cell transplant because the first one failed.
I can’t say this is my worst nightmare, because a total lack of response wasn’t even on my radar. About 20% of stem cell transplant patients reach the near cure. In one study, 92% had some remission. There is no evidence at this point that I’ve had any benefit, so I would fall into the miserable 8%. I had at least that much hope and so many were praying for a good outcome.
At this juncture, there is a slippery slope toward a rabbit hole of despondency or bitterness. The thought of all I’ve gone through for almost six months and to have nothing to show for it is almost beyond comprehension. Self-pity is also a drawing force. Therefore, I will choose, as best as I can, not to let those thoughts enter or take over my head or they would consume me. I just will not go there.
So, what does this mean? On Tuesday of next week, I go back to traditional chemotherapy. If I am really lucky, and so far, I haven’t been, the cancer will have weakened a bit and it will respond even better this time. After a few weeks, if the cancer isn’t going down, we will start to add more drugs to the treatment. We have several others to try, then there are experimental studies after that. There are good things coming, but most are a few years away. Some people do well for many years on chemotherapy alone and that is our hope and prayer now.