Friday, October 1, 2010

Good news and bad news

You know the drill: I have good news to tell you and bad news. Which do you want to hear first?

I will begin with the good. I've started the research that will be required for my book. I'm getting myself up to date with current professional nursing approaches to patients suffering from chronic illness as well as conducting a literature review. My son's wonderful girlfriend is a nursing student at the University of Michigan and she took a course in Chronic Illness, so she is also planning to give me all her notes and required reading. I'm off to a good start and excited about the project. The hepatologist/transplant specialist in Detroit has received my entire medical record and is reviewing it now; I must wait until her office calls me to set up an appointment. It will probably be a 2-3 day ordeal that will include a liver biopsy and a battery of tests. I will be happy to have some answers and get the information I need to make a decision about pursuing a transplant (or not).

Okay, here's the bad. I've been feeling absolutely lousy. The last 4 days in a row I've woken to feeling as if I'd been hit by a bus or competed in a iron-man triathalon, without training. Every muscle, joint and bone hurts. On Tuesday, my hips and legs hurt so much I could hardly walk. The pain was definitely bone pain (a familiar feeling since I was on Neupogen during treatment and it's major side effect is bone pain). This means my bone marrow is working overtime for some reason and my guess would be low platelets. Again. When you have a chronic illness it becomes very important to listen to your body, so I said "Ok, I hear you loud and clear" and spent the entire day in bed yesterday, resting. I forced myself to eat 3 healthy meals and just let my bones do their work. But I woke up feeling pretty much the same today so I don't know how long this will last. Some days I can get up and work through it, but other days it does not get better and I finally acquiesce to resting. But...I'm hanging in there and am certainly not about to give up. I know I will have a "good" day in the future and I live for those days, which are becoming less frequent by the month.