The latest news is that my oncologists want to try a clinical trial that includes a new - not yet approved - drug called Panobinistat. With luck - a good bit of luck - this will start on Monday. The plan is to give me RVD therapy, which is the "standard of care" for MM and add the Panobinistat on top of that.
The challenge is that one of my numbers is right on the edge of being high enough to qualify for the trial, They ran me through some tests last week and I was just under the threshold to qualify. They came up with the idea of having me eat and exercise just before taking the blood for the test. So, they arranged for a nurse they knew to draw the blood immediately after I had done some sort of a workout. So, Barbara and I had lunch and then we spent about 20 minutes running up and down stairs. Well - to be honest, I only ran for the first couple of minutes and after that I sort of dragged. Barbara ran with me - to give me moral support, but mostly it drove home how out of shape I am. I then registered for the test and they brought me into an infusion room where the nurse would do the blood draw. After 5 minutes, I got concerned that I was not fresh enough from my workout, so I started doing keep knee bends and leg raises to keep my heart rate up. I got a lot of funny looks; apparently, it is unusual to see people exercising in infusion rooms. Fortunately, I passed the test, but just barely.
I have got to do this again Monday morning - the blood test - not the EKG. Wish me luck.
The other bit of news is that last week when they checked my "vitals", I asked them to also measure my height. They normally do this only the first visit, because this never changes, right? WRONG. It turns out that I am now only 5'8" tall - which is 2 inches shorter than I was last fall and 4 inches shorter than when I was at my peak. This did not seem to particularly concern anyone besides me. Actually, I don't feel any different in my perspective of the world, but I am thinking of getting elevator shoes.
If this keeps up, I will end up looking like one of those cartoon characters that has been crushed by a giant weight and is now only 8" tall and walks around looking like a hat with feet under it. My next drivers license photo will probably include my belt. I have started telling people that I used to be "tall, dark and handsome", but that now I am only "dark and handsome".
The challenge is that one of my numbers is right on the edge of being high enough to qualify for the trial, They ran me through some tests last week and I was just under the threshold to qualify. They came up with the idea of having me eat and exercise just before taking the blood for the test. So, they arranged for a nurse they knew to draw the blood immediately after I had done some sort of a workout. So, Barbara and I had lunch and then we spent about 20 minutes running up and down stairs. Well - to be honest, I only ran for the first couple of minutes and after that I sort of dragged. Barbara ran with me - to give me moral support, but mostly it drove home how out of shape I am. I then registered for the test and they brought me into an infusion room where the nurse would do the blood draw. After 5 minutes, I got concerned that I was not fresh enough from my workout, so I started doing keep knee bends and leg raises to keep my heart rate up. I got a lot of funny looks; apparently, it is unusual to see people exercising in infusion rooms. Fortunately, I passed the test, but just barely.
I have got to do this again Monday morning - the blood test - not the EKG. Wish me luck.
The other bit of news is that last week when they checked my "vitals", I asked them to also measure my height. They normally do this only the first visit, because this never changes, right? WRONG. It turns out that I am now only 5'8" tall - which is 2 inches shorter than I was last fall and 4 inches shorter than when I was at my peak. This did not seem to particularly concern anyone besides me. Actually, I don't feel any different in my perspective of the world, but I am thinking of getting elevator shoes.
If this keeps up, I will end up looking like one of those cartoon characters that has been crushed by a giant weight and is now only 8" tall and walks around looking like a hat with feet under it. My next drivers license photo will probably include my belt. I have started telling people that I used to be "tall, dark and handsome", but that now I am only "dark and handsome".
No comments:
Post a Comment