Moving Forward

Today is Day 83 and I can honestly say I feel pretty good. The CMV is completely gone as of my last blood test - I'll be tested again on Friday. I finish up the CMV medication today so I'll be glad to no longer have to deal with those side effects.

I met with Dr. Pratz on Friday and really like him. He is concerned however about the degree of fatigue that I'm experiencing and began to look at some of my medications as the source. While fatigue is very normal for 6 months to 1 year post-BMT, my fatigue seems extreme. He suggested that the beta blocker I'm taking for atrial fib might be the culprit so he reduced my dosage by 1/2. Beta blockers slow your heart rate down, drop your blood pressure and can even cause depression. Twenty-four hours later I am feeling more energetic and have not experienced any palpitations or other heart related complications. If this continues he might discontinue the beta blocker all together and then look at the Digoxin I am also taking for atrial fib. Since I probably had leukemia (and didn't know it) when I was diagnosed with atrial fib (in Oct. 2008) there is a possibility that it was the leukemia and not atrial fib that was causing my palpitations and rapid and skipped heart beats. Time will tell. I see Dr. Pratz again next Friday and then every two weeks after that.

As I mentioned in an earlier post, I have to get 5 more Lumbar Punctures with chemo injection. My first one is scheduled for August 27th. Naturally I am not looking forward to being stuck in the back with a very large needle and no anesthesia, but it's part of the JHH Protocol for someone who had my type of leukemia. God forbid there be a rogue cell in my spine or brain that's left undetected!

I was telling some friends his past weekend that it is just now sinking in how close to death I actually came. In the past you may have noticed that I rarely use the word "cancer" when I write or talk about my condition - it's painful and scary and very, very hard to think in those terms. Instead I use the word "leukemia" because to me it sounds much less threatening. Call it denial, call it unrealistic, I don't care - that thinking got me through this far and that's all I really care about right now. I feel like I'm finally starting to turn the corner (again!). I guess there will be a lots of peaks and valleys along the way, but I remain optimistic and excited about living a fuller, more fulfilling life.

Some of you may have heard me lovingly refer to my inabilitiy to focus on words and forgetfulness to my "chemo brain". Follow this link (you may have to cut and paste) to see that it really does exist!
http://www.nytimes.com/2009/08/04/health/04brod.html?_r=1&scp=1&sq=lymphoma&st=cse