A Change of Attitude

So, I started this blog in anger and disbelief and sorrow. I wanted to vent, to cry, to scream my outrage...to whom?

Well, no one in particular.

 I was more intrigued by seeing where I changed, grew, or fell so I could learn where to prune, hold up or back as needed, and where I needed to get up and fly right (as my grandmother used to say)

"Straighten up and fly right or I'm going to have to knock you right." She wasn't talking about hitting me, just hitting me with the reality of the consequence I was facing. I understood that anything public I put here could be one of those "knock you straight" kind of consequences I could have been facing.

I realized what I needed then was not so much a blog as a journal. Private so that I didn't embarrass anyone. Not my family, not my friends, not my neighbors....some things we learn, some lessons we grow through, just aren't meant for public eyes. Just aren't meant for sharing. Not in my case, anyway.

I have Chronic Lymphocytic Leukemia, (CLL) I have too many white blood cells, and the reason it happens science does not know. It is known that it is not hereditary, nor is it relative to any other disease (it is not a result of having another disease.) all that is known is that my bone marrow and lymphatic systems don't play nice together all the time anymore. This condition will exist for the rest of my life, as long or as short as God wills it to be; because there is no cure. It requires management and monitoring, and a good oncologist who knows when changes need to be made in my medicines or diet or such to try to keep me in better balance between red cells and white cells.

See, the red cells are the delivery trucks...they bring oxygen and nutrients to cells and take away the waste. White cells are the security force...they defend the blood stream from 'undesirables' like bad bacteria or viruses that cause infection and illnesses. My system went haywire and that balance between defend and deliver gets messed up because my lymphatic system went into overdrive for some unknown reason and as a result became a cancerous imbalance.

There are two kinds of white cells, T-Cells and B-Cells. The T-Cells are the police force that detects bacteria and viruses and attacks them, calling for backups to be produced by the body as needed to fight off infections. This makes the white-ish discharge around a wound when it is infected.

B-cells are like your body's special ops task force soldiers.  The B-Cells are the antibodies, they secrete substances that prevent certain viruses from surviving in the bloodstream and making us sick. They are like a SWAT team patrolling to prevent invasion of viruses.

They all start out as lymphocytes, baby white cells. Once the lymphocytes get into the blood stream they hang out as juveniles until chemistry in the blood stream triggers it to mature into either a T or B cell, depending on the needs of the body at the time the lymphocyte is ready to 'grow up'.  When there are too many of both kinds already, the lymphocytes don't grow up so they hang about in the blood stream waiting for a cue that never comes. As a result, they take longer to die. So not only is my body making too many lymphocytes, the ones it makes have this little peter-pan syndrome going on. My body was making more, but the ones it already made were living twice and thrice longer than they were supposed to.  After making so many white cells so quickly, the white cells my body makes are now mutant.

One might think the white cells are the good guys so having more of them is better than having less....but it's not. Having too many is worse than having not enough. Having too many triggers the body's overall endocrine system to believe a major illness is present, after all, there's so many white cells around. This brings on fever responses, sometimes so high or for so long they can do brain or organ damage, and it can be triggered suddenly.

Also, the blood stream is like a hose that is only so wide. It can only hold so much at a time in any one place. If there are too many white cells, that leaves much less room for red cells. So anemia accompanies the condition of the cancerous white cells, complicating the issue. With the anemia, there aren't enough delivery trucks to do the job and cells get less nutrients, in the meantime the waste stacks up. This can cause toxic results...which of course trigger more white cells as a response...it becomes an infinite circle of cause and effect.  Fatigue and aches much like having the flu accompany this condition as well.  And things like memory and higher-order thinking are effected if a less-than-desirable amount of oxygen is getting to brain cells.  So I am blond. Even my blood is blond.

Having not enough white cells can be fixed by boosting immune responses. Having too many can't just be stopped casually...at the risk of not being able to make anymore ever. So resorting to chemo for CLL is a major step and one that is not taken lightly by any oncologist. It's usually the blood that carries the chemo to the tumor to attack it. In my case, my bloodstream IS the tumor and that makes it very different from any other kind of chemo there is.  When it happened to me, I went off in a hundred directions emotionally.  Thus my second post here...so long ago.

I am fortunate, more so than others, that I am well-grounded spiritually. I was frightened, angered, astonished, sad, and anxious all at once. Luckily for me all those result in one response,(once I settled down from the shock,) ... prayer.  I calmed down and began to pray. As I prayed, I calmed down some more, and the cycle continues to this day for me. Prayer, patience, treatment, prayer, etc.

If nothing else, this experience has, and continues to bring me closer to the things I value; family, faith, and living simply.  CLL is not just my burden, it has also taught me much. In this economy, living on one income because I can't get work (Why should we hire you when there are 50 other 'not sick' folks out there to pick from?..yes, I have actually been told that.) and because I have the fatigue-thing going on I can't reliably stay awake for an entire 8-hour shift. Employers are not supposed to discriminate, but what they think they are doing is protecting their business from liability by not hiring me at all in favor of someone else.

If I had the stamina to work for someone, I would have the stamina to start my own business? I can't even keep a job working for someone else.  This brings me to having to live more simply. To make my resources do the most for me without sacrificing quality in order to get quantity. It means I have to find balance in every aspect of my life in order to live reasonably. Something I am still learning...I have a long way to go.

The rest of this blog then, is going to be focused on improving my quality of life rather than worrying about the quantity of it, however much God wants it to be.


_ _ _ _ _ _ _ _ _ _ _ _ Relax. God's in charge.