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!!

One year PCR results!

So it has taken me forever to write about this!  We did finally get Josh's one year test results back.   The results were good.

• April 2011  91.43 %
• July 2011     5.19 %
• October 2011  .09 %
• January 2012   .08% 
• April 2012   .02%

If I don't seem ecstatic it is because I am not.  I am just a serious Negative Nelly when it comes to this stuff.  I really wanted to see 0.  It's like I had that built up into my head and anything less (I guess I should really say more) is just not acceptable to me!  ;)   And really, folks, this PCR test is just one number.  And totally not indicative of what his future with the disease will be.  These tests can show when things are going wrong, but really aren't great at predicting whose disease will progress or mutate.  BUT, they are numbers.  And numbers are something that our puny little brains can understand.  I can read/hear a hundred times that this number is not the most important thing, and yet I still cling to it.  And the more I read I realize that many people NEVER hit 0.  And that the testing isn't exactly perfectly reliable, so even a 0 result doesn't really mean a 0 result.  But he is continuing to improve, so that is exciting!

So one year out things are going well.  Josh's main side effects are fatigue, nausea, rash, and hair loss. The hair loss is pretty funny!  He has lost tons on his head, but his legs are pretty hysterical.  He has huge areas with not a single hair and then other spots on the same leg that look normal.  I don't know if I will ever get used to seeing his shiny "looks like they've just been shaved" calves walking around.  :)

Dr. Quintas and I agreed that the rash seems to be worsening, but since it is not itching too much they aren't going to do anything about it.  It is slowly moving down to cover his whole body.  Six months ago it was just his head and torso, then his arms too, and now finally his legs are covered in red dots.

We really think that eating paleo/primal has helped him in the fatigue department.  At least as related to his shift work... he thinks it might be a bit easier to stay awake in the morning hours.  He's been eating paleo for six months now and lost a good chunk of weight.  He loves it and wants to eat that way forever.  I'm the one holding us back in that department!  :)

We have officially made the transition to bloodwork every three months, and bone marrow testing every 6 months.  This makes me crazy nervous!  But it has been 2 months since we have been to MD Anderson and things are OK.  That being said, I am anxious for July to come so we can get him checked out. 

The MD Anderson bills are still slowly rolling in.  Every single month we owe more than the month before.  It is kind of depressing to see the bill going up and up.  We are hoping to make some big changes in the next year to help us out in that department, possibly downsizing to free up some funds.  We appreciate those of you who continue to use our Amazon link to purchase your Amazon stuff.

And speaking of bills I really want to talk about a friend of ours that is going through a difficult time.  God brought Gretchen into my life through our homeschool co-op.  She is an amazing lady and her husband was diagnosed with stage 3 colon cancer not long ago.  He had been laid off before his diagnosis and now they are in a difficult financial situation.   He can no longer receive unemployment benefits and they need help with their household bills.  We set up a Give Forward account for them, just like our friends did for us a year ago.  I know how overwhelmingly suffocating the fear of bills can be.  Your world is crumbling around you and yet you are worried about paying your electricity bill.  It is just not how it is supposed to be.  She needs to focus on Robert getting better.  They need to focus on the emotional health of their kids.  They don't need to be focusing on paying their mortgage.  Please prayerfully consider giving to this family.  Even small gifts add up.  Take a leap of faith to help this family you don't know.  You will bless them in ways you can't imagine.  The tangible results of giving to them are obvious.  We can't see the emotional and mental results of helping them in this way, but they are there, and they are oh so powerful.  Thank you, friends!

Our one year appointment!

Howdy all!

We are busy bees around the house tonight getting ready for Josh's appointment at MD Anderson in the morning.  We are going for his official one year bone marrow aspiration as well as meetings with the doctor and the trial nurse.   So Josh is showering since he won't be able to for a couple of days, filling out chemo logs, and gathering up empty pill boxes.

Of course we know now not to take his meds in the morning (even though they tell us to) so I'm pretty certain I won't have to have a smack down with anybody.  Although I will prepare myself just in case!  ;) 

I know we're only gonna see the doc for a few minutes so it's not anything major, but I'm still excited to hear what he has to say about how Josh is doing.  Our very first appointment with Dr. Quintas was VERY long when he went into detail about survival rates based upon the one year test results.  Of course we won't have the one year results for another couple of weeks, but I still want to hear what he thinks about Josh's numbers.  AND Josh has lost all the weight he had gained (plus more!  Yay Josh!!), so this time Dr. Quintas will not pat him on the belly while making remarks about his size!  :) 

At this point this is all routine,  but we would still appreciate your prayers! 

One Year Cancerversary!!

Can you guys believe it has been one year already?  We really can't!  It honestly seems just like yesterday.  I asked Josh tonight if he could remember last April 1st and he said he remembered every detail.  Me too!  I had thought that emotions and feelings would have faded by now, but they definitely have not. 

Josh has had one more bone marrow test and another blood work appointment since I blogged last, both with good results.  Although I was a bit disappointed with the bone marrow results, hence my lack of blogging.  It can be hard to stay positive when you have your hopes up for something and I guess I just didn't want to be a downer!  :)  If you remember the main number we are looking at is his PCR score:

• April 2011 -       91.43 %
•  July 2011 -          5.19 %
• October 2011 -     .09 %
• January 2012 -      .08%

Do you see why I was kind of disappointed?  I had really expected it to be not detectable this time around.  Obviously we are thrilled that it is staying low, but I just had this great dream that he was going to be this perfectly responding patient like they had never seen before.  He goes in for another bone marrow at the end of this month. 

We did have great results just this week with his bloodwork though.  For the first time in an entire year there were no abnormal components in his blood!!  Even the nurse was pretty pumped about it on Wednesday.  At MD Anderson they give you these lab results that have all abnormal things printed in bold, so when she printed it out and there was nothing in boldface we were pretty pumped!!!!  Just one short month ago his platelets and neutrophils were still off, so this was actually unexpected.  We are praying that he can maintain these levels.


We are would appreciate prayer for us now that we are entering a new phase in Josh's treatment.  We have been at MD Anderson every 4 weeks for the last 10 months or so, but now we are only going to visit every 12 weeks.  It is truly scary for us to not have the reassurance that things are still OK.  Even now whenever Josh feels off or sick  we immediately let our brains start wandering to the thought that he has stopped responding to the chemo.  The thought of not going for three months is terrifying! 

We want to thank everyone for continuing to do their Amazon shopping through our link!  As we started the new year all of our deductibles started over and each month we owe more than the month before, so those checks have really helped us with those bills.  It really adds up very quickly and we appreciate people taking the time to think of us before making purchases!

This year we were really blown away by the generosity of our friends and family.  And it still hasn't ended.  Just this week one of Josh's friends from work GAVE us a car.  Yes, GAVE us a car.  It's not as if they just passed over the keys either - they bought parts and fixed it up for us.  I still don't even believe it.  We have been a one car family since Josh's car was totaled over a year ago.  And that has meant lots of missing out on stuff cause it isn't logistically possible.  This is such a tremendous blessing to us.  It is moments like this when I am overwhelmed with God's love for me, providing in ways that I wouldn't even imagine. 

I'll post again last this month when we go back to MD Anderson! 

December test results

Oh my, I have really fallen down on the job!  It only has taken me 3 weeks to write about Josh's December labs.  Christmas was so super crazy this year with Josh working the whole time I feel like this week is the first time I've had a chance to breathe!

Josh went for labs the week before Christmas and everything looked good.  The liver numbers were back down this time, although still not normal.  We were happy to see that they really are just bouncing around.  Hopefully when his body gets used to the constant chemo he will level out. 


In other news we will be making a few changes to try and help Josh deal with the one and only major side effect he has experienced - fatigue!  Seriously, the man is just so tired.  In the months before he was diagnosed he was getting increasingly fatigued, although we didn't really realize how severe it was.  After his blood levels stabilized after getting on Tasigna he was feeling so much better.  And really he still is, but at the same time is so exhausted compared to how he felt five years ago.  Of course there are many things that factor into that, between the night time working schedule and 3 demanding kiddos.  But it is very obvious to me what he is experiencing is not normal.  He had a week off at the beginning of December and we kept basically the same hours that same week.  That is when I realized how much the chemo must be affecting his sleepiness, cause I did not experience anywhere near the same amount of sleepiness as he did.

And really I think the bulk of the problem is that he is struggling to sleep during the day.  He wakes up at the six hour mark and just can't sleep any more.  So I've been reading up on it and we are going to make a few dietary changes that I hope will help him!  I'll keep everyone posted!

We go back for another bone marrow test on the 18th.  Hard to believe it has been three months since the last one!