18 month checkup!

Have ya'll been wondering what happened to us?!  I have been a bad blogger.  I had been waiting to get the results from this checkup, but unfortunately they are not in yet!  We went in almost 2 weeks ago for his 18 month bone marrow testing and are still waiting on the results.

The good news is that the doctor seems very happy with how things have been going.  We are praying that the results from this month come back as 0%!!  We'll just have to wait and see.

We were anxious to meet with the doctors this month cause Josh has been struggling a bit recently.  A couple of months ago he actually got taken to the ER in the middle of the night.  They came and picked him up from work... it was just a mess.  Hours and tons of tests later they decided that he probably had an anxiety attack.  I literally laughed out loud when the woman asked if he had anything to be anxious about!  ;)  Obviously, he does!!  I'm pretty sure my response was, "Well, he DOES have cancer, so there's that..."  He came home with a bottle of pills to use in case it happens again. 

My heart just breaks for him cause I can see how stressed and exhausted he is all the time.  Last month he actually voiced to me that he feels so bad every day that he would go on disability if we could afford it.  :(  It makes me so sad for him.  I know he is SO grateful so simply be alive that he doesn't voice his issues too often.  But it is starting to wear on him.

His main issues have been not being able to sleep and  stomach pains/cramps after eating.  Even after staying up for his first night back to work he has only been able to sleep for about 5 hours each day.  So five hours each day, plus losing sleep on his first days off and first days back to work AND fatigue as a side effect of the medicine are all just piling up to make him miserable.   And there has not been a day in the past 6 months that he hasn't complained of feeling sick to his stomach.  The doctor said neither of these are usually related to his Tasigna.  But I have no doubt in my mind it has to do with his CML cause he has never had these issues before he started taking chemo.  Josh lost about 30 pounds over this past year so I had thought that might have something to do with it, but Dr. Quintas did not.  His diagnosis for all the issues he is experiencing is sleep deprivation.  Who would have thought?! They gave him some Ambien to try.  So far it hasn't been amazing.  Even on two pills he still hasn't been able to sleep a full 8 hours.  They made him an appointment in December to talk to another doctor at MD Anderson to try and get this sleeping issue taken care of.  I am looking forward to seeing if it will actually fix his other issues as well. 

The not bothersome side affects he is still experiencing are head to toe rash (which thankfully no longer itches) and the weird hair loss.  The other thing we know is going on with him is some off counts with his liver.  In the past 18 months there hasn't been a single test that had all normal liver counts, so this isn't really a surprise.  But specifically his bilirubin has been high this entire time.  It was bouncing up and down a bit (all higher than normal) but this month we looked and you can see that overall it is trending up, which is not good.  The nurse told us that next time if it is any higher they might want to hold his chemo for a bit till it normalizes.  And that scares me to death!!  He does not want to miss any pills, so please pray for his liver to get its act together!!!  :)

I have hesitated to share all of these things before today cause I don't want to seem like we are complaining or are not grateful that he is still here with us.  But at the same time I think transparency is important, and the this is the real picture of what is going on with him.  Your prayers are still needed and appreciated!

Today is Joshua's birthday... he is now officially on the down side of his 30s!!  So thankful that he is still here by my side, silly jacket and all!!!  Love ya, JP!!