12/13/16 Long Trip Back From Houston

Dr. Gooday, Nurse Alice, Nurse Sarah and crew at BATCC were all about like I expected them. BATCC seems to get along just fine, though I am not there every day to see its inefficiencies, nor the frustrations of its employees. I, on the other hand, am very familiar with my own frustrations, and today they are many.

Gooday increased my Ruxolitinib dosage to 20 milligrams twice a day. This has not come without some problems that will require some getting used to. The first among them seems to be a rage I am unable to control. The other side effects are typical. The rage is not, and I do not know where it comes from. I am livid. Easily set off. Apt to erupt in a blinding fit of absolute fury…bellicose, morose, unable to take the slightest kidding, joking, ribbing. Things that were once funny now only make me angry. This has been building for some time. It may have something to do with the CLL and the medicine. It may have something to do with the pressures of work. It may have something to do with the RLS that causes me to go for days without sleep, and when I do sleep, it is not quality sleep. It may have to do with a general fatigue that makes me want to throw up my hands and just shout, “I quit! I resign! You can have it all!” It may be a combination of all. It is likely so.

This is not like me.

I do not want your comments on this post. I am being as honest as I know how, revealing more than I normally do. “Hang in theres” and “We’re pulling for yous” will not do anything to help me. I will, indeed, appreciate your prayers, but you can pray for me without platitudes, for I fear that in this current state of mind I will not receive them.

Of course, coming back home with an active kidney stone was no help, either. From Winnie, Texas, all the way through Lafayette, Louisiana, I was in agony, ready any minute to head to an emergency room. About Lafayette, though, the little culprit stopped moving about. Debbie had to drive all the way home because I always carry some kidney stone emergency medication with me, which helped a bit, but rendered me unable to drive. As of late, my driving ability is not so good anyway, since the lack of sleep issue is a problem. Couple that with eyes that now do not like working at night, and I am now understanding all those times my grandparents, then my parents, said they didn’t like driving at night.

The good thing is that my blood numbers are stable. Were it not for the ruxolitinib, I would not have been able to keep up the pace I have for the last three months, but I fear that pace cannot continue, even with the ruxolitinib. The ruxolitinib helps me deal with the fatigue caused by the CLL, but it does nothing to help with the fatigue caused by a lack of sleep, which is an issue entirely unrelated to the CLL, and so far has been extremely difficult to treat. After sending him an e-mail, Mainmost, my sleep doctor, wants to see me to try some different therapy and perhaps experiment with different dosages of the medicines I am currently taking. The Primary RLS (Restless Legs Syndrome) has involved more than just my legs, morphing into a cephalopod-esque monster that enbraces my entire body with its suction-cupped tentacles, including my arms and shoulders. I spring awake like I have been poked with a cattle prod just as soon as I fall asleep, if it will let me fall asleep at all, and the more tired I am, the worse it is.

I usually say that I am not complaining, just stating the facts…but let me assure you, today, I am complaining. I am complaining with all the rage and fury that is inside of me, and that is a substantial amount. Others will vouch for it if you are of a mind to ask them.

I’d rather write about something funny. But nothing is funny to me.

I’d rather write about something pleasant. But nothing is pleasant to me.

I’d like to eat something good. But nothing is good when you already have a brick in your stomach.

I’d like to take a walk. But taking a walk is difficult when you are easily winded because of a low hemoglobin count. I get out of breath. Being short of breath is a side effect of the ruxolitinib. So is a low hemoglobin count. Oddly, you can be short of breath on this drug and have a normal hemoglobin count. Having both makes it doubly bad.

I must remind myself from time to time that I am in the middle of taking chemotherapy again. While it is not traditional chemotherapy, being the later, state-of-the-art immunotherapy, it is still powerful medicine used to treat a cancer, or at least hold it at bay. I suppose I want to feel like I was forty again, but I’m not. I’m fifty-nine and taking chemo. There is a difference.

My ability to multi-task is suffering horribly. I certainly am no longer capable of juggling three oranges. I can only focus and keep one going. This is a new development. My brain is a shadow of its former self. Again, I can trace this to a lack of sleep as much as anything else.

Ailments, like enemies, tend to accumulate on a fellow as time goes on. The worst boor is the one who spends all his time telling you about his ailments. I do not want to do that.

Today, you got some things on the list I do not normally share. Whether that is a good thing of not, time will tell. I do know this….having written about it has helped me peel a layer off my fury, which seems to be retreating like a thunderstorm reeling off into the distance, which, having blown and roared and scattered things all over the yard, leaves behind cool air and negatively charged ions which cling to every particle of contamination in the air and drop them to the ground, leaving a freshness that was not there before. One can still see the flashes of the storm in the distance, the storm now the problem of those presently in its path.

The storm is over here, now, having blown itself out. The fury has subsided.

I think I’ll take a nap.

Tomorrow will be a better day. If not, I expect I’ll throw a fit. If I do, I expect it will be at least as effective as the many fits I’ve thrown today. Had I seen a windmill, I would have attacked it with reckless abandon.

Writing sure helps.

©2016 Mississippi Chris Sharp

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