There’s a road in California pasture country called Brown Material Road. It’s one of my favorite road names, and there’s little doubt about the nature of the brown material that the name refers to. Well, Marilyn and I have been driving down our own Brown Material Road lately. Upping the metaphorical ante, let’s just say we’ve been caught in a shitstorm of events, the sort of telescoping of crap in a short frame of time that can tax your ability to cope on every level. A friend of mine was kind enough to provide a weather map showing a shitstorm over our home in Arizona, and it is posted below for your amusement, and mine in retrospect. (Hopefully it will not head your way as it meanders toward its usual resting place, Washington, D.C.)
Suffice it to say that one element of the storm is called Autoimmune Hemolytic Anemia, which I suspected I had on a Friday and which I began treatment for on the following Wednesday. So far, the treatment (steroids at a rather high dose, backed by cautionary antibacterial and antifungal drugs) seems to be working. This all sounds so easy as I write it, now that I have had a chance to catch my breath (oh God, an anemia pun of all things)! I promise to go into the experience in detail one of these days, as there is a lot to tell (not the least of which is the way this all is playing into my current CLL treatment plan, which was about to get started when the AIHA hit.)
But the part of the story I want to mention today is the importance of a patient being proactive. Thanks to all the time I have wasted reading CLL patient sites and groups on the internet, I was way ahead of everyone in suspecting what was really going on, in insisting on the appropriate tests, and in getting the attention of those in the busy hem/onc’s office who needed to know and to act on my behalf. Now, sometimes I make lousy decisions, but in this case Marilyn and I played it just about right: the lesson is, if you want to get good medical attention, do whatever you have to to get the ball rolling and then monitor the process closely, making sure the ball gets to where it has to go. This made the difference between me getting help in time and me collapsing on the street and needing transfusions.
And so a word of thanks is in order. This was the first medical crisis, as it were, that I have had with my CLL. Being able to quickly access information from CLL Topics (thank you, Chaya and PC), the Professors’ Posts on ACOR (thank you, Susan and Terry), and the experiences of fellow patients on CLL Forum (thanks, Denise and all) helped save my butt. I did not have to reinvent the wheel and was able to come up to speed on the subject quickly. What a marvelous (worldwide) web we weave when first we practice to CLL deceive.
So I am now recuperating and looking at the effect of this on my CLL treatment plan -- 72 mg of methylprednisolone daily does wonders for slimming the neck and spleen and pushing crap out of the marrow, if only it could be made sort of semi-permanent in a non-toxic kind of a way . . . And, of course, there is dealing with the other non-CLL issues that have hit us like frozen blue ice falling from an airplane toilet in the sky. So while this plays out I may be rather absent from my usual internet haunts, and I may not post here quite so frequently. Other priorities demand my attention. When the shitstorm hits, you drop everything but the most immediate and essential. But I’ll be back with my story one of these days, and I expect to have some interesting things to tell. Meanwhile, watch out for brown clouds on the horizon.
GET MY CAR-T CELLS TOMORROW FOR MYCLL - Patty and I have been enjoying Seattle. We’ve been here for 3 weeks prepping for the JCAR14 trial at SCCA/Hutch. Tomorrow is my big day- I get the CAR-T ce...
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