“Immunodeficiency (or immune deficiency) is a state in which the immune system‘s ability to fight infectious disease is compromised or entirely absent. Most cases of immunodeficiency are acquired (“secondary”) but some people are born with defects in the immune system, or primary immunodeficiency. Transplant patients take medications to suppress their immune system as an anti-rejection measure, as do some patients suffering from an over-active immune system. A person who has an immunodeficiency of any kind is said to be immunocompromised. An immunocompromised person may be particularly vulnerable to opportunistic infections, in addition to normal infections that could affect everyone.”
Allow me translate that into something a little more understandable for my situation. Leukemia means that my body does not have the full ability or capacity to fend off badness . My Mom is in the hospital with pneumonia. I am not allowed to visit. This sucks.
So everything is in a weird kind of stasis right now. Everything that I can know about this wonderful stuff has been identified and explained. I’ve got some idea as to what is coming my way in a few months and my relatively minor symptoms are being treated. But I’m still walking around with an incurable cancer in my body and I don’t feel *it*. Nervous and apprehensive? Sure. But that foreboding sense of doom isn’t here. Truthfully, I hope it doesn’t show up. The only real thing that I can wrap my head around is the hospital.
My Mom was hospitalized with pneumonia. The docs are running all kinds of test on her to figure out which type she has and it dawned on me that me being there might have not been a bright idea. Yep. Until they know for certain that my Mom’s bug is absolutely not contagious, I shouldn’t be in direct contact. Leukemia=compromised immune system and what is fairly easy for a normal person to fend off is not so much for me.
Yes, I know that I am in the calm that is the eye of the storm. I’m making the best of it.
To say that the past few weeks has been an emotional roller coaster would be an understatement of gigantic proportions. I go from feeling fine, to being gouged, to being diagnosed, to being staged, to being told that I need to start chemo. And all the while still feeling fine (or so I thought). I had been trying to at least mentally align with the fact that my body was going to be flooded with poison to do stuff that was going to make me “better”… even though I was feeling fine. As a pragmatist, I had to make sure that this was my only choice.
My wife and I have learned that it was far from my only choice. Yes, the chemo would have reset my body’s blood factory. But to summarize what I have learned from Dr. Keating: it would be like using a nuclear bomb when all you need is one well-placed sniper round. Chemo is the gold standard when all the indicators fit in the little treatment flow chart as mine did. Keating, though, is at MD Anderson, where flow charts aren’t used. MDA is at the very edge of what is happening right now in cancer research and treatment. While I have “staged” later than early onset, there is no hurry to start *any* treatment because my symptoms are not that advanced and there really is no benefit to starting early. And I have also learned that my very specific flavor of CLL is highly responsive to a targeted monoclonal antibody regimen that I will start in January. It’s not chemo. (Que the chair dancing music…)
As for those symptoms and feeling fine… turns out that I do have a few that I did not recognize. I’ve come to learn that getting horizontal and passing out in front of the TV at 8:30 is not just a sign of getting older. And I’ve learned that drenching night sweats are not the result of eating too much Thai food (although I’m sure that doesn’t help). Turns out that these are both symptoms of an overworked immune system. When the body works hard, fatigue and heat are the by-products. And being tired all the time is not “normal”. So I take an Aleve when I get the night sweats and doc has put me on Ritalin LA to combat fatigue.
All of you who know me and my already hyper approach to life can start giggling now. Yesterday was my first go with the pill. I’m pleased to report that I did not feel like taking a nap after a big lunch.