Wednesday, November 19, 2014

Birthday update!

Poor Joshua got to begin his birthday celebration today by getting up well before the crack of dawn (after his day of no sleep!) and heading down to MD Anderson for a checkup this morning! I felt bad for him.  But he did at least get to eat birthday cake for breakfast at 5:30 AM.  :)

I can't believe it has been so long since we have updated - sorry, you guys!  Josh has moved to yearly bone marrow aspirations so we really don't get as many updates ourselves.  He continues to go every three months to have a general blood check but we don't get PCR results at that time usually.  He found out today that evidently he will get a PCR test done at the six month mark since his last BMA (which was today) so we should have those results in a couple of weeks.  They told us the PCR test is super pricey so they don't do it every time, and also my understanding is that it isn't as accurate with blood as it is with bone marrow. 

  • April 2011     91.43 %
  • July 2011         5.19 %
  • October 2011     .09 %
  • January 2012      .08% 
  • April 2012          .02% 
  • November 2012  less than .01%
  • May 2013            .01% 
  • May 2014          less than .01%

He has gotten a new doctor (Dr. Borthakur) we have already met with a couple of times and we are very happy with him.  He is a bit more informative in our meetings and seemed super pleased with Josh's progress.  They said his results are exactly what they want to see.  So that was exciting.  The most thrilling part for us was that his liver counts were all normal today!  For the first time in 4 years!  The last time we were there they seemed concerned about it and mentioned it could become a problem for him so this was super great news. 

He is continuing in his drug trial for Nilotinib, but they told him today that the trial will be closing after getting just 3 more patients.  This doesn't mean that the trial ends, but just that they are at capacity and won't allow new patients.  This shouldn't change anything for us and we are beyond grateful that we will continue receiving his Tasigna for free. 

They other exciting news (that I'm sure all of you know) is that we had another baby!  Such a surprise to us because we were pretty certain we were done!  Our very first appointment with the doctors at MD Anderson they told us to make sure to use birth control and to not get pregnant.   So we took that to heart and made the mental switch to the idea that we were done having babies.  We didn't really know if we were going to want anymore four years ago, but I so vividly remember crying and crying knowing that it wouldn't even be a possibility.  They didn't have a real reason to advise against it, but they just didn't have enough data to say that it was safe.   Understandable since most of the people who have this cancer are well over childbearing age.  God had a plan, though,  and we had a beautiful baby boy, Owen Reid,  in September.  We  are all in love with him, even though is a handful!

Tuesday, May 21, 2013

2 Year Bone Marrow Results

We just had our official 2 year checkup a couple of weeks ago and the results are already in!  We are certainly becoming pros at the MD Anderson/bone marrow thing!  We were sitting there in the office waiting and I was looking around and you can pick the new people out in a heartbeat.... so scared, so confused, not sure what is going on or what to expect.  Those are the people who always ask you what kind of blood cancer your husband has and want to talk about it.  The long timers are cool with reading the paper, LOL.  :)  I always love to talk to the new folks and try to give them a reassuring word.  Learning the ropes at MDA definitely takes a while!

When Dr. Quintas came in to see us he immediately asked, "So, why are you here today??!  I look at your numbers and they look great and I'm thinking why is this man here to see me?"  He cracks me up.  You just have to hear him with his spanish accent.  Adorable.  Anyways, he had a bone marrow aspiration and got some PCR results.  Remember last time when the results were "less than .01%"?  Well this time they just left off the less than part.  So his 2 year PCR is .01%.  We would have liked to have seen a repeat of the "less than", but, well, its beyond my control so what can we even say about that?!  I asked Josh what he thought about it and his response was, "Honestly, I do my best not to think about it at all."  And then he winked at me.  :)  He has a thousand opinions about everything in the world but none about this, evidently!  I'll be anxious to see Dr. Quintas in a few months and get his opinion on this bumpy ride at the bottom of the PCR results.

  • April 2011     91.43 %
  • July 2011         5.19 %
  • October 2011     .09 %
  • January 2012      .08% 
  • April 2012          .02% 
  • November 2012  less than .01%
  • May 2013            .01%

So shockingly he doesn't have to go back for another BMA for an entire year!!  Isn't that exciting?  Since he can't drink alcohol anymore I think he's kinda gonna miss that post-Propofol drunk feeling!  But he definitely won't miss being sore.  I was a bit nervous about not having a PCR result for a whole year but they told us they will now be using his blood to test PCR levels.  Why on earth they haven't done that all along I don't know.  I have read so many blogs/message boards where folks have talked about getting PCR results from blood and I was a bit frustrated Josh couldn't do that.  I understand that the number of bone marrows was dictated by the drug trial protocol, but still wanted to get more PCR results.  I'm just nosy like that!  Now we don't go back till August and then get to meet with Dr. Quintas in November. 

Thanks so much for keeping up with us, friends!  It really means a lot to get those emails/calls/texts checking on Joshua and seeing how we are doing.  We love you guys!

Monday, April 1, 2013

Two year cancerversary!!

Did everybody wish Josh a happy cancerversary today?  I seriously forgot until I saw something on FB about April Fools!  I just looked back at our 1 year cancerversary post and realize that we still feel the exact same way.... every single little detail about that day is still etched into our brains!  I guess its just not something that you forget. 

We haven't had much to post cause we haven't been back to MD Anderson since November.  We were maybe supposed to have an appointment a couple of months ago, but we did not make it.  They scheduled it on a Saturday (it was just bloodwork) which was really weird, since he has never had one on the weekend before.  We didn't go to it and nobody called or wrote, so I guess it was maybe a mistake on our schedule.  This is officially the longest we have been without having his levels checked.  I would say that is kind of scary, but we feel oddly OK with it.  I think we have kind of accepted that he is going to feel super crappy off an on and its OK.  It doesn't have to mean something awful, it is just part of the journey. 

So here are the big PCR results we haven't shared with anybody.  We've been sitting on them for 3 months now.  :)

  • April 2011     91.43 %
  • July 2011         5.19 %
  • October 2011     .09 %
  • January 2012      .08% 
  • April 2012          .02% 
  • November 2012  less than .01%
YES, they used the words "less than .01%".  Isn't that great?!  He will go in for his 2 year checkup in May where he will have another bone marrow test, bloodwork, and get to meet with Dr. Quintas.   I am looking forward to it, although the scary part is that from here the numbers either go up or stay the same basically.  I have seen for many people that their PCR bounces around a bit at the bottom of the scale.  I can imagine that is a little bit difficult to mentally deal with, so I'm praying his results stay the same!

Those of you who still take the time to purchase all of your Amazon stuff through our link, it is so much appreciated!!  The return rate for us is actually quite large... it adds up very quickly.  I say that cause I am a person who thinks $20 is a lot!  :)  We are able to take whatever we get from Amazon and pay that much more towards our growing MD Anderson bills.  So thank you friends!!

Monday, November 19, 2012

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!!

Saturday, June 16, 2012

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!

Tuesday, April 24, 2012

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! 

Sunday, April 1, 2012

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!