I expected to be post-transplant now. Instead, I wait. I wonder. I get irritated at the infections that are keeping me from getting a transplant. I get irritated at the doctors that tell me I am not ready for a transplant. I get irritated at me for not pushing for a transplant earlier (when treatments didn’t seem to do any good.) I get irritated with me for getting sick in the first place.
Frequent lab tests mean that you become familiar with the people in the lab. Last year, I had one phlebotomist in particular wishing me well constantly and telling me how sorry she is that I am not well. This, along with comments that I am looking good (higher hemoglobin levels) or not so good (lower hemoglobin levels or chemo treatments) was the routine each time I went to the lab, even if someone else drew my blood, One morning I went in and she commented on how pink I look, indicating good hemoglobin levels. Sorry, it was the cold outside that made me “pink.” My hemoglobin levels that day were low enough to get me a blood transfusion. She meant well, but week after week after week, this got tiring, especially when I was tired or fatigued or not feeling well. I think it was the way she said it, something in the pitch of her voice.. About all I could do was say, thank you.
So, what’s the point of all this? One thing that doesn’t bother me, normally, is when people say, “Get well soon.” Any form of get well soon or get well someday is fine with me. Hope your doing okay or hope you’re feeling well or any such sentiment is fine with me. I won’t bite your head off, even if the sentiment gets repetitive. So, wish me well!
I’ve also noticed that some people are afraid to say anything or ask anything once they learn I am diseased. Don’t worry, it’s not contagious. Don’t be afraid and ask how I feel. I ask myself that every day, so it’s no big deal. The nurses and doctors I deal with ask those questions and many more intimate questions each time I see them, which is more than once a week. It doesn’t bother me. One question that sometimes bothers me is “When are you going to get the transplant?” I can’t answer that. My doctor can’t answer that. I will find out after the infections, damned infections, are gone.
“You’re looking good.” is something I hear relatively frequently. It seems that people expect me to look worse because of the MDS. Some days I do look worse. Other days I don’t. How I look on the outside and feel on the inside don’t always match. Most of the time I feel good. I tire when hemoglobin levels go down. I tire whenever I do something physical. Walking up a flight of stairs tires me briefly, two flights wipes me out for several minutes more. Anyway, how I look or feel seems to be like a grab bag. You never know what you’re going to get when you ask. Right now, I’m feeling good. This morning was not quite so good. I felt good this afternoon when I could walk around the house, in the backyard, look around, and not feel tired and worn out. It was a nice day and for the first time this year, I wore shorts. I like warm, but not steaming 90’s, weather. I still feel good.
I don’t much like the question, “What do you do all day?” I don’t like it because much of the time the answer is “nothing.” Still, if you ask, I won’t bite your head off. I might ignore you, but that’s about it. I walk around in the house, go to the store (maybe grocery shopping with Cyndi) and when I’m not too tired, just try to be active. It’s harder said than done. I end up watching too much TV between my inside-the-house strolls; browse the Internet too much, reading up on this disease or reading too much depressing news. I am always intending on doing little things. Sometimes I do something, often not. When I do something, I feel like I accomplished something major and feel good, no matter how little the thing was that I did. Doing this blog is a little something that keeps my mind going and provides an outlet for my thoughts. One of these days, I am going to finish scanning my old negatives. It’s boring, the waiting for the scans to complete and I will read a little while waiting. But, I think the real reason I have delayed doing it is because most of what’s left to scan are scans of vacation pictures or pictures of things when I was physically active. I think I don’t really want to be reminded of what I am missing. It’s hard to look at the past when the near-term future has me doing nothing. It is hard to envision long-term, but my heart is set on an around the world trip when I’ve recovered. It is something to look forward to and it is something feasible and doable. Staying optimistic isn’t easy, but I’ve surprised myself and have stayed optimistic. Most of my life I’ve tended to be more pessimistic or neutral than optimistic.
Optimism vs. pessimism … that’s for another post, maybe. I’ve said enough in this one.