Do you remember them? Paint-by-Number kits. Each kit has a picture laid out with small sections with numbers in them. Also included was an artist’s paint brush and a strip of plastic containers with various paints in them. Each vial had a number on the lid. The object was to dab a bit of #1 paint in all the #1 sections. Just like a picture puzzle, a photo of the completed project appeared on the box cover. It was always beautiful.
The end product of the project never seemed to match the box top. It took me years to figure it out. The box top product was painted by a true artist who failed to follow instructions. Sure, the artist painted all of the correct colors in the correct spaces, but he didn’t limit himself to the spaces. He blended his colors. He broke the rules. His project was beautiful. My projects always looked like something out of a Technicolor horror film.
I learned something from that observation. Numbers are important, very important. However, even more important is the interpretation of the numbers.
I find that I am living by the numbers – blood count numbers. The problem with CLL (chronic lymphocytic leukemia) is that it messes up the white blood cells – in particular, the neutrophils. Neutrophils are a very specialized type of white blood cell. I suppose they could be called the Marines in the battle against disease. Just as Marines are the first into a battle, so are the neutrophils. When a microbe invades the human body, neutrophils are the first to attack. They can either eat the infectious material, release disease fighting chemicals, or call for help. Obviously, when the neutrophils are themselves “sick”, the disease fighting ability is seriously affected. This is called CLL. The “C” stands for “chronic” which means there is no cure. The disease will return again and again.
So what do I mean when I say I live by the numbers? I have my blood checked anywhere from one to three times a week. The numbers we look at most are the ANC – absolute neutrophil count, and the platelets (blood clotting cells without which a person can bleed to death). When the numbers are low, I am in serious danger of infection or bleeding. The bleeding problem is especially serious if it is internal where we cannot see it. This is why I live in a very protected zone.
I stay away from people who are sick. I stay away from crowds. I don’t eat raw products – even my beloved fruits and vegetables. My steaks are cooked well done. I tend to be a bit liberal with my interpretation, but my beloved jailer, err, I mean wife keeps me in line. Melanie really does a good job cooking things that I like or cooking things that I don’t like in a way that I can tolerate them.
So you can see what I mean by living by the numbers. The upside to this is that while I am quite vulnerable to illness, I have only once contracted a serious illness. That is an impressive record.
Living by the numbers also means that even if the numbers are good, the neutrophils may not be. That is why my cloistered life continues all the time. If I need to be out, I usually wear a medical mask, especially if I will be around people. Even Melanie lives by my numbers. She was in Belk a few days ago where a nearby lady began to cough and hack. Melanie had to cover her face and move as far away as possible. You can only imagine what would happen if Melanie became sick with a communicable disease. I could be infected before she even shows symptoms.
I am learning to be a bit “artsy” with my numbers – to blur the lines a bit. One of the ways I do that is through this blog. It is my way of letting people know about many things: CLL, transplants, my faith, our hope, and what’s happening in my sequestered life. While I don’t physically leave the house, I can travel the world trying to encourage everyone I meet through this digital travel machine.
The numbers are important to me. I live by them … so I don’t die by them. Trust me, I’ll be glad when the day comes that I no longer have to pay such close attention to them. I want to go shopping at Wal-Mart. I want to attend our church services. I want to sing in the choir. I want to walk the streets, taking pictures of our picturesque city. I want to be able to travel, to see our Oregon grandsons. Until then, this will have to suffice.
Ah, life by the numbers.