Well it turns out the clinical study that we thought I would try next is having a bit of a problem with mortality rates. Seems like a reasonable idea to avoid that one. Not that there is any real choice as they have shut that study down anyway. A stroke of good luck for me there. So, on to the next option I guess.

I am a washout on the current study involving pembrolizumab, yet another monoclonal antibody. Labs show that my kappa light chain counts simply do not reduce the way we would have hoped. Previously, we had seen a marked drop, but the last round of testing showed the counts right back up where they were. It is fairly obvious that the proton radiation treatment for the lytic lesions in my skull actually triggered the reduced count, and the drug did not. Too bad we can’t just keep radiating me, but that too would end up failing if it did not kill me first. Oh well.

Well, it seems there is another phase one clinical study which I will be screened for later this week which sounds interesting. The study is called MEDI2228, and involves a drug which attacks the same markers as the CART type study that I wanted does. It is what they refer to as BCMA (B-cell maturation antigen) approach to the disease and the research Docs seem pretty positive about it. I am supposed to be included in the ‘cohort 5’ group of the study which means that I will be getting the maximum dose. The underlying message there is that my disease is progressing and if we are going to try something, we might as well go all the way with it. Pedal to the metal, gangbusters, no holds barred and all that shit. Fine with me. I always did like the 110% stuff.

There are risks of course, but I am told that other patients are tolerating this well with the most common side effect being a low platelet count. Not a big deal; they can pump a bag of platelets in anytime. I have had platelet infusions before. They make one a bit queazy for a while, but nothing like puking sick or anything. So that little issue is easily remedied if required.

There is one huge advantage to this study/treatment…and when I say huge, I am not exaggerating. NO STEROIDS! There, did I shout that loud enough? I can repeat it at full volume should you want me to. In fact, I think I will just for the sake of it: NO FUCKING STEROIDS! There, I feel much better now. Dexamethazone at 40mg a week has been a part of me for pretty close to five years now. Cortico-steroids are nothing to screw around with. They are hard on the body, and do really goofy, unpleasant shit to your personality, mood, and method of interacting with people. I am a damned hot-head anyway. I will go a long time before I explode, but when I do, it is unpleasant to say the least. Take that and add dex to it and you end up with a hot head about 10x as angry with a trigger that is 1/10th the pull. Not good. This is one of the reasons I spend a great deal of time on the road and in a milk house down at the farm. Alone. That rage does not have to impact anyone else when I am alone. And driving calms me down very quickly. I have not a clue why, but it does. Anyway…. no dex is a good thing, obviously.

If all goes as planned, (wouldn’t that be a switch, based on recent experience) I will be in Rochester getting yet another round of testing done. That unfortunately includes another bone marrow biopsy. I am still limping from the last one. I think they hit a lesion and chipped or cracked the iliac crest. It still hurts after almost ten weeks. Previous biopsies hurt for at most three weeks. So something ain’t quite right. I asked that we do an Xray or two before we do the next biopsy so we can see where we are going. They came back offering a PET scan, which is cool, but total overkill from my point of view. I guess if they want to do that and the study sponsor will pick up the cost, it is fine with me. More fun images to look at.

I do have fun with that, playing like I know what I am doing and all. I even have the software to look at and process the DICOM images which are produced by PET, CAT, MRI and other radiology equipment. It is interesting to me…. . And the software is open source and costs me nothing. I get to play radiologist for free. Hot damn!

I don’t mean to sound all pessimistic and shit, but I am wearing down physically. To be brutally honest, I am on the down hill side of this. From this point on, life extension is nothing but a roll of the die. Side effects are starting to pile up, and that is slowing me down. Way down. The recent addition of blood clots is a good example of how this disease and the treatments of it wear the physical part of one down. And to be honest, it wears the soul down too. The intellect, not so much. Cognitively, I suspect that I am about 8% to 12% less effective than I am used to being. Memory is impacted a bit, and ability to concentrate on technical stuff like programming is reduced. Some of that might be age too, but I don’t think so. The change has been too quick and lacks in the subtlety that I observed as Mom and Dad aged. I think it is the disease and the drugs. But what the fuck do I know?

I guess that what I am getting at is this ends only one way (of course it is the same end result for all of us anyway, which is rather morose – isn’t it? ). I am looking for an end that includes a bit of dignity, a dash of integrity, and perhaps a hint of honor. Maybe that is too much to expect, but I am hoping. Again, I am sorry if this is all a bunch of self-serving melancholy crap. I need to say it. I need to write it. It is my story, a part of my legacy.

Now that I got that shit out of my system again (yes, some of what I write is repetitive). We pick up and move on, one day, one step. Looking back is allowed, but not in the middle of the step being taken. Looking forward is allowed, but viewed as a pointless rumination: Entertaining, but pointless as it is ruled by the laws of probability and there are entirely too many key variables to calculate. Might as well roll the dice. Just focus on today: Make it a good day as best one can.