Thursday, May 15, 2014

I'm sick. Again. Aaaargh!

True to form, I am sick. Again. My head is pounding and won't stop. My throat is on fire and has tiny little blisters on the roof of my mouth. I am congested and my doctor tells me to STOP USING AFRIN. But I only use it at night so I can breathe because sleeping when you can't breathe is miserable and I need rest, right? They say if I keep using it, I'll loose my sense of smell and taste eventually. Well which is worse? I'm thinking about that one. I'm coughing a little, but not that much. And, worse yet, I GOT PINK EYE. I mean, severe horrid PINK EYE. I haven't had pink eye since I was a child. I wanted to claw my eyes out. I didn't but it was really hard not to. Thanks to eye drops it is gone now but it was the height of misery. My entire torso aches and my spine is sore.

And there you have it.

I am fatigued. Today, I am tired of clinic, even though I love my nurses at Huntsman. But, case in point, last Friday, I should have been in clinic for about an hour. But one of my ports wasn't giving a blood return so we had to use heparin to break it up. Well, I was in clinic for almost four hours. I am tired of scheduling pretty much all day Friday for clinic. I am tired of being immune compromised and being sick every three to four weeks. I am tired of an aching torso, which they tell me, may never entirely go away. And I am tired of looking at my legs and seeing absolutely no muscle. I used to have very nice legs. I ran, they were strong. But Dex eats away at muscle. I am weak and I look weak. I still can do great power walks but I look like a frail girl and I hate it.

One day I will be done with maintenance therapy and I will get my life and body back, I hope.

Thanks, myeloma.

Last week, Jenny and I gave a presentation at BYU to a college class. William went with me as an observer. We talked about myeloma and the www.myelomacrowd.org site and its efforts. There is nothing more important to me than trying to cure and treat this disease. Outreach and education is critically important and sharing my story is something that I find great meaning in. In my prior life, I'm not sure I felt great meaning in anything really. I was just someone who worked worked worked and wrote lots of checks and just tried to survive. William said that he teared up in our presentation and he learned a lot about the disease that he didn't know about before. I suppose we were successful, which is good. It's amazing how a diagnosis can radically change your life in the blink of an eye.

So I get rest today, I nurse my pounding head, I do a little complaining and carry on.

My friend just lost her battle with breast cancer yesterday. She was diagnosed five years ago and fought a great fight. Hers was very advanced and aggressive and she beat her life expectancy. Cancer is evil, deadly and frightening. We fight it because we are given no choice. How we allow that to change us is ours to decide. I chose to make me better, stronger, kinder, and live life with purpose. The alternative is just simply unacceptable.