Wednesday, June 3, 2009

Day +127 - No news yet, some graphs

On the left is my new PICC line, now in 2 flavors! If you remember, the last PICC catheter I had back in November only had one lumen (catheter) and the nurses would get so annoyed using it since they would have to switch back and forth between drawing blood and infusing medications. With a dual-lumen PICC, they can use both lines simultaneously, in either direction.

Today is the day where my case will be presented in front of the transplant teams at the Hutch. Hopefully they'll come to a solid consensus as to the plan of action. Luckily there are some seriously smart folks on the team, some of the same doctors that oversaw the very first transplant at the Hutch in the 70s. And the woman presenting my case is someone who cares a lot for me and who was my discharge doctor. She's an old hat too, and during one clinic visit we geeked out about MacBooks, old computers and punch cards, and the latest technology trends. So hopefully the right people are looking out for me.

Right now my counts are dropping quickly each day, even more so than last year when this all started. My platelets are already down to 15 even though I had a platelet transfusion last Friday, so I'm scheduled for another one today. I'm good at practicing patience, and am still holding out that this is just a temporary glitch and that it resolves itself. If the doctors agree that that's a likely scenario and recommend it, I'm more than happy to just be careful and wait it out. But it could be an entirely new form of disease such as aplastic anemia caused by the chemotherapy used to get me where I am today. The unknowns at this point are the most frustrating, since it's hard to plan or think about things a week or two ahead. But either way, I'm doing a pretty good job keeping my spirits up since for the most part I feel fine and can function normally, albeit very carefully without my immune system. It's like I'm a shiny new car with a rebuilt engine, but driving around with busted air bags and a leaky oil line. UPDATE: Johanna read this and thinks that I'm like a shiny new car with a rebuilt engine that just blew a head gasket.

Yesterday I went in for my daily Neupogen shot, so now I have several bruises from the shots all over my upper arms. Today I'll go in for another one. These will go on indefinitely until we figure out a plan. But Johanna has been able to take time off work so we've been enjoying the nice weather and doing fun stuff around town, more than we normally would, like browse around REI for summer clothes, get coffee, meet for lunch together, drive around the city, etc. It doesn't take much to entertain me so I haven't been *totally* in the doldrums.

My friends say that my new girl blood in me is just acting moody. Ha! Maybe it's time to buy some fancier soap and start wearing cologne :)


For those of you that want to see what's been keeping me up at night, when I have a harder time getting my spirits back up, here are the latest charts of my blood counts. The purple bar is when I had conditioning chemotherapy for the transplant, way back in January.




1 comment:

George said...

Interesting graphs... it's pretty sudden they dropped off. You can see a trend going back to April
1st where the red blood cells are sloping down...but the other ones went down faster than GM.