Friday, October 29, 2010

cautiously optimistic

Hello ladies and gentleman. Im back in Seattle after another short visit down south in Houston. The trip went pretty well overall with the exception of being a bit worn down from flying. My energy these days is down a bit from being anemic and neutropenic.

Dr. Cortes was quite pleased with my initial response to the Ariad drug. The very fast improvement in my blast count was the main reason for excitement along with very few side effects on the medication. My brother went with me this time and over the last month he has been my main travel caregiver to my every other day blood transfusions. He seems to enjoy hanging out with his big brother and I know I have enjoyed hanging out with him. On wednesday Houston actually set a temperature record for that day at 91 degrees. We werre in the hospital all day so it was nice and cool in there. Wednesday completed my first 28 day cycle on Ponatinib, and we did a few more tests than two weeks ago. We did a regular complete blood count, a research blood draw of about 10 tubes of blood, a physical exam, an EKG, vital signs check, and finally a bone marrow aspiration.

The staff down there is very friendly, and my bone marrow nurses Dee and Tommy were amazing. It was as if I was just having a great conversation with them throughout the procedure, and I hardly noticed the lydocaine injection and bone marrow needle going in. Tommy had to take over for Dee as he was the heavy muscle to get through my stubborn bone in my hip. It all went very well with minimal pain yesterday and today. At the end of wednesday we had to hang out to get a platelet transfusion at the Mays clinic across the street at this enormous facility. The two clinics are both part of M.D. Anderson but are separated by a quarter mile long sky bridge. By the time we were done at 8pm (12 hour day at the hospital)....we had missed the last shuttle back to our hotel, but realized that we could actually walk from the Mays clinic from the parking garage only about a 3 minute walk. It was good to get a little exercise after sitting around all day.

As my good friend Hans has mentioned many times to me, its good to remain cautiosly optimistic about good results....thank you Hans for the reminder! My initial response with my blast count went from 79% on day 1 to 1% on day has now bounced back to 8% over my last 3 blood draws and actually today it went back down a little to 6%. Its easy to get very excited when things go well, but as Ive been reminded too many times things can turn the other way quickly.

The results of my bone marrow will start coming in early next least the preliminary results. These should be a better indicator of how things are really going with the new medication and Im very excited to see how they look. So Im now into cycle 2.....early days, and overall am feeling pretty well despite being low on my counts and needing transfusions constantly. My platelet production isnt working right now so Ive been getting those at least every other day. Also now my red blood cell count has been dropping making me anemic and needing transfusions twice for those. My overall white blood cell count has now dipped below 1000 and my infection fighting neutrophils have bottomed out at around 30 (neutropenic is below 500)

I will be celebrating another birthday on sunday and with my amazing wife by my side Im feeling younger all the time. I know a lot of people are going through some tough times right now with their own issues, but I would like to send out a special best wishes for Carleen with her father and of course Hans and his family.

Go Sounders!

This one is for you Lammy........power to the butt chins!


1 comment:

  1. Power to the butt chins????? Must be what the younger generation says...oh how I laughed!! I am very very excited for you Tyler..I was excited the day you started and am so optimistic. just look at my son, that will be you I know it in my heart. You go Tyler!! You are amazing ..Happy Birthday