The past ten months have seen more changes in my life than any other period. I daresay few of the changes have been good. It has not been a pleasant time.
In November 2018 my daughter’s husband, for some unfathomable reason, took his own life. My beloved stepfather passed away from pancreatic cancer in December, departing this earth on his eighty-sixth birthday. Also in December, my brother was diagnosed with an aggressive form of Chronic Myelomonocytic Leukemia (CMML). It started out being debilitating and never let up. Because of my brother’s illness, and my own CLL, we decided to cease business operations once we had fulfilled our existing obligations, so I would be retiring at sixty-two.
In April 2019, an unwelcome tornado (is a tornado ever welcome?) severely damaged my home and all the other buildings at Timberview Lodge, completely destroying the guest house adjacent to my home. The tornado also stripped all the huge, majestic White Oak trees from the property. In spite of the severe damage, we all survived the tornado without a scratch. It could have been much worse.
Every issue I have with sleep compounded itself in the past ten months: refractory restless syndrome, resistant to all medications, kept me awake for days at the time. My sleep doctor noted my distress and began a diligent search for answers, which resulted in being sent to another doctor for the prescription and monitoring of some heavy-duty narcotics, which is the only thing left for me, which I do not like taking as there is no good place that they can lead. Oxycodone is the narcotic I am prescribed. If and when it fails to be effective, the only thing left is methadone, which is very effective in the hardest RLS cases but has its own set of problems. I hope to avoid that, but it does not look favorable. Even now, as the RLS is semi-controlled, I have developed the inability to go to sleep. I can’t shut my mind off and RLS meets insomnia, leaving me doubly unslept.
My brother passed away from his CMML in September. He had suffered terribly in the ten months since he was diagnosed, including becoming immobile and completely losing his hearing. I am here to tell you that losing a brother is hard. Losing a brother you were very close to is harder. Losing one you worked with every day, and worked well with, is even harder. Losing one that was like a father is the hardest. Between my stepfather and my brother, every father figure I had left was lost to me in that ten month period. I am hoping that 2020 keeps us all away from any hospitals, funeral homes, or cemeteries.
Planning on playing more music once I retired, I got a new malady that is not uncommon to those who have had CLL for a long time (me!). In June, I suddenly developed some severe pain in my right arm pit and in the nerves and tendons in my right arm. With numbness, a loss of strength in my right thumb and index finger and rapidly atrophying muscles, I was sent to a neurologist.
Dr. Hazmat (a moniker) is as pleasant as a root canal. He has no bedside manner. In fact, he seems to have no social skills at all, which does not mean that he is not a good doctor. I will give him the benefit of the doubt. After an expensive MRI and a nerve conduction study, it was determined that I did indeed have some nerve communication issues, but nothing in my neck or spine was impinging on any nerves, which would likely have required surgery.
He said that a virus had likely invaded my brachial plexus, resulting in the severe inflammation in my armpit, causing a loss of nerve impulses and for me to lose the neuronic pathways and muscle memory it has taken me a lifetime of practice and performance to develop. He was not very clear, though. I think he still thinks in his native Urdu and translates everything to English before he speaks, or to Urdu as he listens, which perhaps accounts for the fact that listening is not something he really cares much about. He is not the only physician with listening shortcomings. I expect you know one or two, yourself.
“So, exactly what is my diagnosis,” I asked Hazmat in the hallway making a future appointment after he had abandoned me in the examination room, mumbling a few words about a virus as he exited. He was not only shocked, but seemed indignant that I would dare to speak to him after my allotted five minutes of his time were up.
“I told you in the examination room,” he said after his Urdu was translated into the English his tongue reluctantly fashioned, and agitated as if the examination room was the only place I was allowed to speak to him and I was no longer in the exam room, my time being up. “Brachial Plexus!”
I shot back, impertinently I’m sure in his estimation and he would not be far from the truth, “Brachial plexus is not a diagnosis, it is anatomical feature.” The nurses and clerks eyes first grew wide in horror at my impertinence, then settled down to normal as their hands hastily covered their mouths to suppress the laughter erupting inside.
“A virus,” he added with a shrug of his shoulders.
“A virus? So some unknown, mysterious virus invaded my right brachial plexus and left me with a right hand that I can’t use? Is that the diagnosis?”
“Yes,” he said.
It was too easy. He had already prescribed me some methylprednisone, a corticosteroid that is excellent for reducing inflammation. I asked him for another prescription. He agreed. It was the least he could do. He had also prescribed visits to physical therapy, which were helping, I admit. After I talked to Hemosapien about this, he prescribed some acyclovir, which is an anti-viral drug.
I went home and did some studying of my own. After scrolling past hundreds of google search pages, because if you want to be effective using google you have to get deep in your search, far beyond the drivel that first pops up, I found the abstract of a study conducted at The University of Maryland that outlined what I was looking for: Viral infections leading to nerve damage in CLL patients.
My compromised B white blood cells, or lymphocytes, unlike us upon our exit from business, are not able to fulfill their obligations. The CLL has made them defective. The B white blood cells target viruses, just as Neutrophils (another white blood cell) target bacterial infections. I’ve got lots of B white blood cells, very likely many more than you, but they are slackers. They won’t do their jobs. The study indicated that CLL patients who have had the disease a long time are much more prone to infections with the herpes zoster virus which everyone carries if they have ever had chicken pox. It is the same virus that causes the shingles, and CLL patients are very prone to shingles outbreaks, which are, again, worse than a root canal. I sure had my share of them until I took the Shingrix vaccination. Now, I am wondering if the vaccination, preventing ol’ herpes zoster from flinging shingles, has caused it to look to create mischief in some other ways. In the study, it confirmed that herpes zoster infections could be localized (in places like my brachial plexus), causing intense inflammation leading to peripheral neuropathy (like mine in my right hand).
So, if the study is right, and it applies to me (it sure seems like it does), then the dots can be connected and I know something that Hazmat doesn’t, or perhaps not. Maybe he knew this but wasn’t gong to tell me any more than “virus”. Likely he knew. But, with his curtness and poor social skills, I’ll likely never know for sure whether he knows what I so hope he knows and was able to find on google. I’d like for Hazmat to be a good doctor even if he is a dick. It would be so much better if he told what he knew. In any case, he was right, and what virus it was was not important since the virus was gone and I was merely left with its terrible effects, and for me, having only twenty pounds of grip strength in my right hand rendering me unable to hold a guitar pick is terrible. The thing that Hazmat did not know, or knew and didn’t say, is that this problem in my hand and arm is likely a complication of my CLL.
Hemosapien called me up after me last CBC to tell me not to be too worried about my even-higher-then-the-normal high Absolute Lymphocyte Count since I was still dealing with the retreating viral infection. Hemosapien is so good to me. How many doctors call you out of the blue these days? I had already thought of that, knowing better than to be too alarmed over the results of any single CBC, knowing that even if the unfavorable trend is established, nothing would have to be done until my next CBC or even the one after that. They no longer treat CLL just by blood numbers; they wait until there are symptoms like fatigue, drenching night sweats, enlarged spleen, etc., all things I had prior to my first treatment which subsided after, except for the fatigue. The fatigue, I reckon, can be traced to being sixty-two, unable to sleep, and the CLL, better known as the CLL triple-fatigue whammy.
My hand is getting better. The buildings and grounds of Timberview Lodge are getting better. My brother and step-father won’t get better, nor, yet, has the void they left in my life. My son-in-law won’t get better, nor, yet, has the pain I feel when I see the pain in my daughter.
So I will wait here like Job, not blaming any of this on The Lord, nor on any shortcomings in myself. I will, however, anxiously await the coming of 2020, anxious to leave 2019 and its many woes behind me. It’s too bad that 2020 is a presidential election year, and we have to suffer all the foolishness, bitterness, and hateful things we will have to endure because of it. But that is the topic for someone else’s story. It is easier to not write about politics than it used to be.
Fair winds and following seas, brother. I’ve already needed your help and advice a thousand times since you passed. I expect I’ll always need it, but I’ll learn to get by without it. It’s what we humans do…move from one loss to the next then muddle through the best we can.
It’ll be lots easier when I get my hand back. Maybe in 2020 I’ll be able to reach out and shake my own hand. I’d like that.
©2019 Mississippi Chris Sharp