Bad Blog Owner
That I am. However, September did not turn out to be the month I had hoped for. I have lost more friends to this stupid disease and have been plagued by symptoms/side effects myself.
But, before I go worrying everyone, let me preface that by saying that there have not been any dramatic shifts in disease activity (that I am aware of). Instead, I have been riddled with itching comparable to what I experienced in Montreal on the MGCD 0103 trial. As well, the chronic anemia I have has been really flaring leaving me with very little energy.
I had hoped that September would be a gentle ease back into autumn activities, workshops, a few courses and ongoing projects; however, I have been pretty inactive most of the month which, of course, for me, leads to sporadic bouts of situational depression.
I think it is safe to say I am also experiencing significant treatment burnout. In the past, this tends to happen when I enter a phase without a definite plan, which is the case now that I have finished the six rounds of Bendamustine. Well, actually, that's not exactly true.
Dr. C. here has been extremely on-the-ball with regard to future treatments and already has several options queued up. I guess it is just hard to get excited about more chemo (it has been four-and-a-half years of one drug or another) and the unknown side effects that come with it. Still, in writing that, I am glad that options have thus far kept appearing when I need them.
That said, equanimity is an elusive state these days. Not to mention, relentless itching, while it might sound trivial, has been one of the hardest symptoms for me to deal with throughout this whole ordeal.
There are probably no words to truly describe what it feels like to have my entire body engulfed in such an extreme physical sensation. It is not like just having a camping trip's worth of mosquito bites - the best way I can think to describe it is to say it feels like all the blood in my body is coursing through my veins with daggers scratching me unceasingly from the inside. It is worse at night - I do not sleep and instead writhe around experiencing alternating states of itching, scratching, anxiety, and utter exasperation.
While itching is a common symptom of Hodgkin's, we have never felt that it is a definitive indicator in my case as I have always had underlying skin issues. I have been extremely itchy and had no disease activity, as well as had significant progression and no itching, so it is not especially reliable. However, it does seem to be my nemesis throughout these past few years. Our best guess is that it is, for better or worse, an auto-immune response of some sort.
So, with all this talk of cat-scratch fever, are you itchy yet?
I apologize if you are. Whenever people talk about itching, I start to scratch, but that's probably just me and the crack-head driven rototiller running amuck through my veins.