Been a few weeks, but certainly some busy ones.
After the first month of Revlimid I had my monthly appointment with the local oncologist. Although we didn't know it at the time (took blood tests at that appointment), the Revlimid seemed to be working. My igG went from 3,996 on April 28 to 2,628 on July 18. My igA and igM are moving in the right direction as well, and my Kappa and Lambda light chain (free) numbers did too. This has continued through August's tests, although not as significant a drop in the igG.
BTW I couldn't explain those numbers if I tried, save to say they are the 5-6 markers that the doctors track my disease with.
Sunday, August 24, 2014
Friday, August 1, 2014
Beat Down.
I feel tired today and light-headed. Part of that is a lack of sleep -- in fact I'm hoping it's most of it, because if this is the new norm I'm not going to be a happy camper.
That's part of the problem with all of this -- you never really know what the new norm is. Not to mention between being so sick last week, the Neulasta shot Monday -- God only fucking knows what "normal" is like.
Yesterday was a difficult day. I haven't seen my therapist for several weeks due to scheduling and health-related conflicts, and as usual the walls fell down and I just core dumped everything that has been going on lately. Not sure how many epiphanies we really discovered, or perhaps even the value of exorcising all of that darkness yesterday. It's all kind of a blur today anyways, fogged by lack of sleep and a workday of putting out annoying fires.
Of note from the session, or at least sticking prominantly in my mind, is my lack of fear of death itself. Is that strange? I fear dying, not death. I don't want to feel pain, to feel myself slipping slowly over time. I don't want to see what it does to those around me who have to bear witness, and perhaps even carry the burden, as my life fails. I stay awake at night horrified by the thoughts of what a dying father will do to my daughter.
But death, on the other hand, I almost welcome in a way. Not to sound suicidal, but when you've lived so long with this monkey on your back, with these thoughts and pains and horrors and drugs weighing you down as you just try to get to work on time and be a good father and husband, it can sound almost comforting to just be able to put it all down for a while. Or maybe for good.
I hope this weekend is more cheerful than I feel right now -- really down and depressed, and it's so goddamn hard to find things to be hopeful about lately.
That's part of the problem with all of this -- you never really know what the new norm is. Not to mention between being so sick last week, the Neulasta shot Monday -- God only fucking knows what "normal" is like.
Yesterday was a difficult day. I haven't seen my therapist for several weeks due to scheduling and health-related conflicts, and as usual the walls fell down and I just core dumped everything that has been going on lately. Not sure how many epiphanies we really discovered, or perhaps even the value of exorcising all of that darkness yesterday. It's all kind of a blur today anyways, fogged by lack of sleep and a workday of putting out annoying fires.
Of note from the session, or at least sticking prominantly in my mind, is my lack of fear of death itself. Is that strange? I fear dying, not death. I don't want to feel pain, to feel myself slipping slowly over time. I don't want to see what it does to those around me who have to bear witness, and perhaps even carry the burden, as my life fails. I stay awake at night horrified by the thoughts of what a dying father will do to my daughter.
But death, on the other hand, I almost welcome in a way. Not to sound suicidal, but when you've lived so long with this monkey on your back, with these thoughts and pains and horrors and drugs weighing you down as you just try to get to work on time and be a good father and husband, it can sound almost comforting to just be able to put it all down for a while. Or maybe for good.
I hope this weekend is more cheerful than I feel right now -- really down and depressed, and it's so goddamn hard to find things to be hopeful about lately.
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