5/19/15 The List Needs Some Help

tortoiseIn an earlier blog post, I discussed the list. Lots of folks want to know about the list, some of which I share, but most of which I keep to myself.

“How are you doing?” an acquaintance recently asked.

“Just fine,” I said on automatic pilot. “And you?”

They beleaguered me with their entire list, which I didn’t really want, nor would they have so readily given had they known that I was more interested in the predicted, poorly predicted, response, since, “How are you doing?” is really, mostly, nearly always the equivalent of “Hello!”

So, I save the list else I find myself in the class of folks who are always talking about their maladies.

“How you doing?” I once asked Bubba, but only once.

Expecting the “Just fine” I instead got this: “Well, my lumbago has been acting up, then I started having issues with skin eruptions occurring from friction from the truss I wear for my hernia, which is causing me no end of problems. I also had hemorrhoid surgery two months ago and have been continuously constipated since because the pain of a bowel movement is nearly more than I can bear. But that’s all nothing compared to the pain in both my hips which need replacing and a torn rotator cuff, plus I need my tonsils out and have bloating and gas from the statins I take for my high cholesterol and the medicine they give me for my enlarged prostate. Other than that, I am just fine, except for I’m nearly blind from cataracts in both eyes.”

I thought he was going to die right there. He went on for twenty minutes, describing in great detail all the things that was wrong with him, all the treatments and medications he was taking, and all the surgical procedures, past, present, and planned that were his lot. I must remember to stop with a simple “hello!” when I see Bubba, who can name off doctors faster than a former frontier Western Union telegrapher could interpret Morse Code.

Now, when my mother wants to know about the list, she pretty much gets the whole one. So does my wife, and most of the time, my brother. But I can’t let myself dwell on the list, since to do so is to enshrine all the things I lack, perhaps at the expense of all the things I have, which is a broad, well-lit path straight to the jail of despair, on which you do not collect $200 when you round the horn. Some things are better just kept to yourself.

I made my trip to the Big-as-Texas Cancer Center (BATCC) in Houston earlier this week. I went to see Gooday, my doctor and one the world’s foremost experts in CLL, and Nurse Alice, an Advanced Practice Nurse. You have met them both here before. They and my local Hematologist/Oncologist, Hemosapien, take good care of me.

“So give me the whole list,” said Nurse Alice. She doesn’t fool around, but gets straight to the point. I gave her the FULL list, since she actually needs it. She wrote things down as I named them, and looked at my chart. The list was longer than last year. She then examined me, feeling here and there, probing, tapping, poking, each touch the definite assurance that the hands were those of a healer.

CLL patients can and do develop many complications over the course of their disease. Some of these can be immediately perilous, such as the CLL morphing into an acute Leukemia called Richter’s Transformation, which offers a very poor prognosis. Secondary cancers are always a worry, but none of these have darkened my door, for which I am truly grateful. There are others, though, that can be just as troublesome, and just as readily deadly, and if not those things, then certainly things impinging on one’s quality of life since they can interfere with it without any remorse whatsoever.

CLL patients can and do have extreme fatigue, drenching night sweats, the development of autoimmune diseases such as Psoriasis, Psoriatic Arthritis, MS, Krohn’s Disease, skin cancers, bone pain, joint pain, susceptibility to viral, bacterial, and fungal infections, neuropathy, enlarged lymph nodes that cause discomfort at the least and pinch nerves and/or restrict blood flow to vitals at the worst. There are other things, too. The list is long. You can look up the entire list of CLL complications if you’d like. Nearly all of them are related to a compromised immune system, which, though one’s blood numbers are good, are still good blood numbers attached to a compromised immune system.

If I were to elaborate on my list, I would tell you, were I actually to tell you, which I am not, that the bone and joint pain, recurring numbness in my fingers, the enlarged lymph nodes, and the extreme fatigue are the part of the long list that would likely be named were I to name anything, which I am not.

When I refer to extreme fatigue, I am not talking about being tired. We all get tired. Everyone gets tired. Some folks are tired of being tired, and I might be named among their number, which would put me in pretty good company because you are very likely there, too. Right now, I am too tired to write anymore and must rest. I’ll be back, right after I sleep, to describe this fatigue for you.

You never knew I was gone.

Electrical substations are a wonder of mechanics and engineering. While the generation plants are the sources of the electrical energy that is delivered to your home and business, the substations are the places where it is transformed upwards into transmission power, and then downwards into distribution power which is the type of power carried along the lines that come to your home. Inside these wonders are many protective devices and schemes, most of which are similar in function to the circuit breakers in your own home, which protect your circuits, and your property and person, against an excess of electrical current, or an “overcurrent” event. A 20 Amp circuit breaker in your panel will trip if the electrical demand placed on it exceeds 20 amps, which can result from a circuit having too many devices plugged in, or in case of an electrical short circuit.

Some of the protection schemes in a substation are for overcurrent, undervoltage, under- frequency, over-frequency, and differentials. All of them work pretty much just like they sound except for the differentials, which are likely the most important relay scheme in a substation because they are there for the protection of the substation itself, since, an electrical short in a substation can be disastrous.

The differential relays look at and gauge the power coming in to the substation (the line), and gauge the power going out of the substation (the load). These must be equivalent. Though the incoming voltages and outgoing voltages and amperages are different, Ohm’s law informs us that these two things be equivalent if everything is right. Thus, the differentials measure the incoming and outgoing, and if they are equivalent, then the differentials are satisfied and everything works like it is supposed to….and you turn your lamp on the the bulbs shines brightly.

When the differentials sense that there is more power on one end or the other, or a difference, their logic requires them to assume that there is a problem inside the substation itself….a direct short….a malfunctioning transformer….an unfortunate, now-fried raccoon atop some switch….and they kick in and open the devices that take the substation off line, nearly instantly. More current coming in than is going out is not allowable, nor is its inverse.

My energy levels seem stuck in the differential zone. At times, and frequently, the energy going out exceeds the energy coming in, and my personal differentials kick in. WHOMP!!! is the sound my internal switch makes when my differentials engage, and I am instantly off line. No more energy is available from the source because my differentials sensed that there was a deficit between the outgoing and the incoming, with no reserve. When this happens, I just stop.

I am not the only CLL patient that has this complication, as it seems common across the board. Some days it is sheer willpower that makes me go, but this can last only so long as there is a connection to the source…when the differentials kick in, this connection is lost until it can be reset.

Gooday came in to the examining room, giving his usual bear hug.

“These symptoms of yours, you know that they are not going to get better. You have quite a collection and are bound to gather more. With CLL, it is usually not the leukemia itself, that claims you, but one of the complications it enables. Any one of these could take a bad turn,” he says, matter-of-factly but still friendly. The facts are the facts. Let me have them.

“So what do we do? My blood numbers are still good,” I said.

“Remarkably good,” replied Gooday, “but the mounting complications, collecting like stagnant water in a tepid, tadpole-filled bog is not a good indication.” (Okay, those weren’t his actual words; they are mine, but I get to tell this story like I want to, and those are somewhat equivalent, not in an Ohm’s law kind of way, but through the poetic license of language and the frailties of memory.)

He continued, “The CLL cells have enzymes called cytokines, which are inflammation producers of the first order. Inflammation is the source of many, many illnesses. A new drug we are researching for use in CLL, which has been used for other blood diseases, called ruxolitinib (Jakafi), specifically targets particular cytokines on the surface of the CLL cells. It is not chemotherapy, but immunotherapy. The Phase I trial was very successful. We are now entering into a Phase II trial, and you are a good candidate. Targeting the cytokines we believe will reduce the symptoms and source of the inflammatory-based complications, and the number of extant CLL cells as well. Fatigue is the primary focus of the trial, since the most common compliant among CLL patients is heavy fatigue that interferes with the ability to do routine things and diminishes the over-all quality of life.”

[ For those of you who are interested: https://clinicaltrials.gov/ct2/show/NCT02015208 ]

That was me. While there are other complications I have successfully added to my collection, a nefarious collection indeed, it is the fatigue that gets me, stops me, prevents me, sends me off-line: a purveyor of weariness that is at times intolerable.

“Most auto-immune diseases are triggered by inflammation, and cytokines are the chief inflammation distributors. They wreak havoc everywhere they are present. The CLL cells are loaded with cytokines, which are the cause of the fatigue and the accumulation of complications,” he added.

“Accumulation of complications,” I thought to myself. It reminded me of the wise saying, “Friends come and go but enemies tend to accumulate.” I have accumulated as many enemies as I want, more actually, but their nature is to accumulate and remain. They are not fleeting like the pleasure derived from a bite of a well-seared rib-eye, being more akin the the heartburn and inflamed gall-bladder one gets when one has too much of a good thing.

If I went on the trial, I would need the assistance of Hemosapien and his excellent clinic at home, else everything would have to be done in Houston. I sent him a text. He called me back immediately. He is like that, God bless him.

“Would you be willing to participate with me?” I asked after explaining what I was about.

“Of course,” he replied. That was what I needed.

So I am signing up for the Phase II Clinical Trial at Big-as-Texas Cancer Center. I may not qualify for a variety of reasons, and have not been accepted yet, but the paperwork is underway. It could turn out that I am rejected. It could turn out that I am accepted. It could turn out that I am accepted and the Jakafi is useless, produces no favorable response, or even worse, becomes, itself, my ultimate complication. There are no guarantees. There are no assurances. Everything has risks. We manage them as best we can. Life is just simply framed that way.

We shall see. We most certainly shall see.

I’d really like to get a few things off my list.

And then, there is my life-long friend, Rick, who is going today to Birmingham to see if he qualifies for a lung transplant. His lungs, among other things, were damaged by complications from his chemotherapy for Hodgkin’s Lymphoma. He has hardly any lung capacity left, induced by his successful treatment for an otherwise fatal disease. But, sometimes, the treatment is as unmerciful as the disease. Let us all wish him Godspeed and remember him in our prayers.

And, there is Mark, who made his own trip to Big-as-Texas Cancer Center to try to find some avenue to treat his stomach cancer. Godspeed to Mark, too.

And then, there are all the people one sees as BATCC, those in masks, in wheelchairs, in the supporting arms of loved ones, many seeking to extract the very last vestige of hope from an otherwise hopeless situation.

Really, the plight of others makes my list seem insignificant.

I am thankful for what I have. I must always remember to be thankful for what I have left, which is a bounty compared to what some others have.

Debbie and I took the grand-kids. On Sunday, we made a trip to the Houston Zoo and had a large time. I was thankful to get to spend this time with them in this manner. I am blessed beyond all measure in everything that matters.

I learned yesterday that the great songwriter, Larry Cordle, also has CLL. I met him once at a show we worked together. I was astounded that he was familiar with me and some of my songs. He actually told me that he thought I was a great songwriter. This was tremendously encouraging. Thanks, Larry, and best wishes as you get treated for your CLL. We have a lot in common, and I am rooting for you in a way few others can!!

©2016 Mississippi Chris Sharp

2 thoughts on “5/19/15 The List Needs Some Help

  1. You will always be my hero, Chris Sharp. Thank you for the wonderful and informative blog I just read. Godspeed to you as well.

  2. Pulling for you and yours, dearest Friend…if you and/or yours need anything at all PLEASE don’t hesitate to call on us…We’ll come mow grass, clean house, help with the young’uns, take a road trip to Texas – whatever y’all need.
    L.perkins

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