3-1/2 week check up!

I had originally thought that this was his 1 month check-up, but we are a bit shy of that mark!  So it is technically a 3.5 week checkup!  Due to the insurance fiasco we got off on our start day/bloodwork day pattern.  He started chemo on a Friday but we're doing all his appointments on Wednesdays, you know, just so nothing is nice and even. :)

So queue up the big drum roll...... Josh's WBC count and platelet counts were normal this week!  Very, very excited over here at the Marlatt house!  His WBC count  was 7.0 and platelets were 162.  Everything else improved, but didn't quite make it into the normal range yet.  So I was a little bummed - not real sure what Josh's feeling were on it, since he is rather silent about such things.  I'm sure in a few days he will voice what he has been mulling over.  Specifically we are still waiting for his hemoglobin, hematocrit, red cell distribution width, and rdw standard deviation to get into normal.  Don't really understand what the last two mean, even after researching them.  Ha!  I think the increased hemoglobin count is really what is helping Josh feel so much better these days - much less winded and has some more endurance. 

So remember that there are 3 responses of getting this leukemia under control.   They will come in order over time - first a complete hematological response, then a complete cytogenetic response, and finally a complete molecular response.  We have yet to reach any of these, but are very close to the hematological goals.  This basically means that all his blood work comes back normal and his spleen has returned to normal size.  He isn't feeling his spleen anymore, so it seems that has come down.  

Sadly, none of these goals really mean that you are in "remission" or that his cancer his cured.  It will always be there.  The only real cure at this point is a bone marrow transplant, which is only a complete last ditch effort if it all falls apart.  If he stops taking the chemo it will all go downhill.  BUT, people who get these responses in a short time period usually don't have problems with mutations.  So the longer it takes for these things to happen, the more likely he is to have problems in the future.  So we were a "teensy bit" bummed that everything wasn't normal at this nearly one month mark.  So very very close, though, so that is encouraging.  Sadly we don't go back for another whole month!  So tons and tons of anxiousness coming up.  I was reading on another CML blog and he described it perfectly....

The worst part of the last six months is the constant cycles of anxiety, followed by relief, then more anxiety. When I was diagnosed, I was extremely upset (anxiety). But then I kind of accepted it and was even excited to see the doctor (relief). When I got into his office, I realized I didn't want to be there (anxiety), but he ended up being great (relief). Then I didn't want to take my first pill (anxiety) and then I saw it didn't affect me to bad (relief). Its been like that for six moths. I will have good blood test, and feel great. I will get some news that isn't great and feel anxious about it and worry. I'll be thinking about vacation next summer and then all of a sudden I will think  "What if I get worse?"

On a lighter note, we got a computer this week!  We sucked it up and went down to Sam's and got the cheapest thing that will work for us.  We need the computer so much to manage all of Josh's appointments and info, and on top of that lots of our school stuff is online (mostly science and geography).  So school has been rather abbreviated these last few weeks.  We needed to buy a computer before the laptop broke, and it was on our list of "to do with the tax return".  Obviously all that went straight to MDACC, so we are so very appreciative to all of those who are helping us out financially right now!  Living on just Josh's salary has been difficult since the day Noah was born, but with these added expenses it has been close to impossible.  Josh's Give Forward Fund will run through the end of the month and we are feeling so very blessed with the outpouring of love we have received! Thank you, thank you friends, family and strangers for your generosity!  We have opened a special savings account and have deposited all the funds we have received so far, just for paying medical bills. 

I have tons more to talk about - like what you can't feed Josh anymore, fundraising for the LLS (get ready to walk, folks!), and lots of other stuff.  Hopefully I can get around to blogging it later this week.