Every CLL (Chronic Lymphocytic Leukemia) veteran knows that one CBC (Complete Blood Count) does not make a trend. I know that.
My trend for the last few years has been up. A normal White Blood Count (WBC) is in the 8,000 range. Mine has steadily, and lately steadily accelerated, until it got to around 78,000. While this is considered critically high, it is not uncommon for we folk with CLL. Some WBC counts get as high as 400,000 without the patient having yet been treated.
There is a trigger, though, and that is a WBC and an ALC (Absolute Lymphocyte Count) that are doubling in a year, or worse, doubling every six months. The six month doubling time seemed to have caught up with me. I had more than a couple of six-month doubles. That, combined with some symptoms, which though mild compared to those preceding my first treatment, pointed solidly to needing treatment again. Hemosapien first said so,and Dr. Gooday2 had agreed.
Yesterday was my day to met with Hemosapien to discuss treatment options. I already knew what they all were, and he knew that I knew, but I wanted to hear what he had to say. Additionally, and fortunately, he’d listen to me when my turn came around. What he said was completely unexpected.
“For the second time today, I have seen a remarkable reversal of the WBC of a patient,” he said, handing me the CBC printout. Six weeks ago I had a WBC of 78,000. Today it was 58,000, a drop of 20,000 points in six weeks.
He continued, “The only two things I can think of are a blown test, which is very unlikely since we do this simple test by the thousands, or else you had some raging infection which has not subsided, and an infection the spurred a count to rise by 20,000 plus that you were unaware of is also unlikely.”
“The first patient I told this to is a man with Del17 (An arm of chromosome 17 has been deleted due to a change in DNA). He had become refractory to treatment and was scheduled to go to Jackson (meaning University of Mississippi Medical Center in Jackson, Mississippi)for a consultation on a Bone Marrow Transplant. We nixed his trip as his WBC showed a remarkable inprovement.”
I thought about this. I had no answer. I was glad the other patient could postpone his bone marrow transplant. They are perilous all on their own and a rough time for the patient.
“Based on what I am seeing here, you meet no criteria for needing treatment at this time,” he said.
“So what now?” I asked.
Come back in six weeks for another CBC and well see then,” he replied, which seemed like an excellent idea to me. Then we changed the subject to family and the recently closed deer hunting season. They were all doing good. He and his sons had had a fun hunting season. My Igg and Igv (markers for immune system functionality) were low, low enough for him to offer to give me a booster shot for them, an expensive shot. I declined. He was OK with that.
He was proud that I had gotten my first COVID vaccination shot on Monday, and advised me to steer clear of COVID exposure. I told him my daughter and two granddaughters have all have COVID, and we kept a wide berth. With an immune system that is severely compromised to begin with, which is one of CLL foremost calling cards, and being low in Igg and Ivg, I couldn’t bear to get it.
Fortunately, the new COVID protocols we have all gotten used to makes it far less awkward not to shake hands. It is easy now. Just put your hands up like it is a holdup, then offer the fist bump. Works every time.
Earlier, yesterday, I was introduced to a friend of a friend. He was not wearing a mask, though no one else was wearing a mask except me. The man offered his hand. I offered the bump. He said, “You are one of those that believe in that.”
“I have a compromised immune system. I wear this mask any time I leave home. If I pick up a fatal infection, it will be while I am wearing this mask and not shaking hands,” I replied. He seemed OK with that.
I’m not telling anyone they have to wear a mask. They don’t. And I am careless about the fact that they might be compromising me. If I am that concerned, I need to stay home and not go anywhere. There’s only a few places I allow myself to go, briefly, and with my mask and hand sanitizer. Loafer’s Glory, the curio and hang-out shop owned by my lifelong friend and mentor, Raymond Huffmaster. I go for a brief visit mostly twice a week. I don’t stay long. I keep my distance. I wear my mask. No one else wears a mask, tough they are respectful of me and keep their distance. Raymond would flat run someone out who wanted to make a scene about me wearing my mask; he wouldn’t stand for it, though I doubt I’d need his help. I’d lie to stand back and watch the fireworks if anyone tried to tell Raymond he had to wear a mask in his own place. I know better. Most who know him do, too. A fellow needs his friends to feel normal and Raymond helps me normalize.
A decade ago, when I was undergoing treatment, my neutrophils dropped to near zero, a potentially fatal situation, as any simple bacterial infection had no neutrophils to counter them. Hemosapien did not want to put me in the hospital, saying that it was as unsafe as anywhere when it comes to bacteria, maybe even more unsafe. I had to go home and completely isolate for three weeks. After that, my neutrophils had recovered on their own, though very slowly getting back to normal. Neutropenia is a side effect opf the medications I was taking for treatment. They make a drug called Neuprogen, which boosts neutrophil production to help you recover faster, but it was prohibitively expensive, and at that time, my insurance had exceeded its annual limitation, with everything coming out of my pocket until a new calendar would begin. Today, I don’t have to worry about an annual limitation.
When my neutrophils had recovered to the dangerously low level of 400, Hemosapien allowed me to go out for brief sojourns, but only with a mask and some hand sanitizer in my pocket. When COVID came around, I already knew the mask drill. Dejà Vú every time I put on a mask. We are old friends, a mask and me.
I am thankful for this six-week reprieve, and I hope the current trend reversing the former, will continue unabated.
Reprieves can be permanent, though pardon would be a much better word. Reprieves are mostly temporary. I reckon everyone who has ever gotten a reprieve really wanted a pardon. I do, too. I reckon everyone else who ever got a reprieve was glad for that. I am, too. Once again, I am, too.
Thank you for your prayers.
©2021 Mississippi Chris Sharp