Frustration!

I think it is very clearly documented how angry it makes me to have to deal with the financial aspects of cancer care!

Seriously  so very frustrated over here!  Josh got this months paycheck and it is WAAAAAY less than it is supposed to be.  I have no idea why.  And of course now we can't even talk to the payroll folks until Tuesday.

And to top it all off our internet isn't working.  The router was acting up before the laptop died and now it has just basically stopped.  I got about 20 minutes worth of internet time last night but nothing else in the last 2 days.  So now I need to figure that whole nonsense out. 

So now I just feel like crying out of sheer frustration!  After we got everything worked out so smoothly last month I can't even imagine going through all of that again.  And then the horrible little thought in the back of my mind is that it is not a mistake and that is just his pay for the month.  Which stresses me to no end. 

Sorry to be such a downer folks!  Please pray for us to feel some peace about this money situation till we can talk to payroll.  4 days is a long time, especially for someone as impatient as me. 

Hope all is going well for the rest of you and you are able to enjoy the long weekend (well, not you dispatchers).  Since Josh doesn't get holidays off it is just a normal weekend for us.  Everyone else have fun!

All alone over here!

So I think this is the first day I have spent time alone in the last two months!  Hard to believe it has been that long since we got the diagnosis and Josh has been home.  Joshua is at work tonight, kiddos are asleep, and the house is all quiet.

I've been sitting here at the computer trying to do some school stuff but my mind keeps wandering back to cancer.  Uggghhh.  It's hard to believe that there will ever be a day that I don't think about it.  And I'm not even the one having to bear the burden of living with leukemia.  It's just making me stressed thinking about Josh being at work right now.  I've been worried about it for weeks cause I am so afraid it is just going to wipe him out.  He slept for about 4 hours this afternoon but I think the man was ready for bed but instead was heading out to the car.

Early on in this situation I read this message board post from other CML patients who were feeling upset and hurt with how other people were treating their leukemia.  That they are "so lucky."  You know, how a pill can just "fix" it.  Obviously that is so far from the truth.  This will never be fixed.  You know one of the first things the oncologist told us was that success with CML  means that you die from something other than leukemia.  It seems so grim to be hoping for that.  Anyways, this one guy's message keeps running through my brain.

"With the exception of my wife who has a front row seat, they prefer to think everything is fine, they don't like the idea of thinking of me being sick.  When they see me I look fine, they don't see how tired I am except I might catch a nap on the couch at Sunday dinner when I never used to.  They don't see me pause half way up the stairs to take a deep breath so I can make it the rest of the way.  They don't see me wake up in the morning as tired as I was when I went to sleep and have to literally drag myself out of bed.  They don't see me wake up every morning with a bad stomach ache.  They don't see that I can't enjoy a meal anymore and I just eat basics to keep myself nourished.  They don't feel my heart take off in rapid beats for no reason and scare the crap out of me.  They don't think about mutations, loss of response, and log reductions.  They don't feel that I am dizzy most of the time, that I can't concentrate that well, and that my memory is often slipping.  They can't understand that I've lost something, that everyday it takes all of my energy and determination to just to maintain some semblance of normal.  That hopes and dreams for the future are tainted and questionable.  Most of them don't worry everyday about how they will pay for their medication that they need to live.  They don't understand that I am not me anymore, I'm a bit different now."

 If you know Josh you know he's not quite that eloquent.  But it makes me well aware of what he is going through.  Most of those sentences have been spoken at some point over the last month.  And it just breaks my heart.  And he so perfectly verbalized exactly what I have been thinking about.  Over and over.  That our hopes and dreams for our future are tainted and questionable.  Tainted and questionable.  Those words have been playing in my brain over and over for days.  Blah.  I know so many people dealing with cancer are so positive and so upbeat.  But I'm just not there yet.  I think I'm still in that sad phase.  Where you are mourning the life that might not be.

So I guess the whole point of this post is to just say please be nice to my man. He would never say it but he really is dealing with a lot. 

Love ya JP!

Back to work!

Just wanted to announce that Josh officially made it through his first day of work without being force fed pomegranates.  Something I was truly fearing. :)  He also can't have alcohol folks, so please don't feed him that either.  Not that there's a lot of boozing it up going on at the railroad.  But you know.  Before.  Or after.  Or wherever.  No alcohol!

And here's the strange thing - I think the man actually had fun!  He's totally not cut out to spend all day every day at home with his only contact being our children, the occasional neighbor, and facebook.  And it seems like he got lots of socializing in today, which you know he loves.  He's my little social butterfly. :P

All joking aside, he did say it was really nice to see everyone.  He was especially touched by all the hugs, handshakes, and pats on the back.  Thank you so much UP folks for having such big hearts and caring for my honey.  Yes, my honey.  I'm not afraid to let you know I'm head over heels for this man!

Tomorrow I'm sure will be more difficult with the transition to staying up all night.  We would appreciate prayers that his fatigue doesn't affect his ability to stay awake.  I think he is mostly concerned about the drive home.  Due to his chemo schedule he won't be able to snack for the hour long drive, which is how he usually stays awake.  So please pray for alertness especially while driving.  Hopefully he won't have any train emergencies or unruly crews that stress him out!  Get ready third shift, he's back!!!

Good numbers, bad feelings :(

The big news is that Josh goes back to work tomorrow!  Happy and sad over here.  Happy he is able to go, but sad to be all alone during the day again!  I think I have truly forgotten how to take care of the kids all by myself! :)

You know he has been feeling SO great.  Really just light years better than before the diagnosis.  And then this last week things have seemed to regress.  He has been super exhausted and is having pains in his leg and knee.  They were so worrisome we contacted his trial nurse to see if we should have some more labs done.  They basically told us, "well, he still has leukemia."  Not really sure if that means this going back and forth between feeling well and feeling bad is normal.  But they told us he could have labs done today if "it would make us feel better."  Ummmmm, yes, it would make us feel better.

And basically there was nothing amiss.  So good, and kinda bad.  Bad cause evidently this is a side effect of the medicine.  It is so crazy that the side effects of the chemo are exactly the same as the symptoms of leukemia.  And I guess bad timing since he has to go back to work this week. They tested his thyroid just to make sure that was normal but we don't have those results yet.  Also kinda bummed that all his stuff wasn't back to normal.  Still waiting on the hemoglobin to get back up to the normal range.  He's close, though.  We don't go back till June 8th, which seems like such a long time.  I really need Lab Corp to open up an office right here in my dining room so I can check his counts whenever it strikes my fancy. :)

And seriously, folks, you HAVE to sign up to walk with us for Light the Night!  I've gotten to the point where I am directly telling people they need to join us.  They have to join us.  Like pretty much forcing, regardless of their resistance.  It will be fun!  Bring the kids and enjoy a nice evening being with friends and helping raise funds to fight cancer!!

So I'm passing Josh off to you UP folks tomorrow, so please take good care of him!  And don't stress him out!!!  Truly the last thing he needs.  He comes in for a first shift to catch up on what he has missed, but will be back to thirds on Friday night.  And please don't accidentally feed him grapefruit, pomegranates, or Seville oranges cause he can't have those and might have a heart attack right there in the office!  Whew.  I had to get that off my chest just in case anyone was going to force feed any of that stuff to him.

Light the Night!

We have officially started a Josh vs. CML team for the Light the Night fundraiser for the LLS.   We were going to wait to make a formal announcement, but we have had some interest in it so we decided to go ahead and get started recruiting!

Here is the info straight from their website on what Light the Night is:

Each year, in communities all across the United States and Canada teams of families, friends, co-workers and local and national corporations come together to raise funds for The Leukemia & Lymphoma Society's (LLS's) Light The Night Walk events and bring help and hope to people battling blood cancers.

Every Light The Night walker is encouraged to become a Champion For Cures by raising $100 or more to help fight blood cancer.

Funds raised by teams and individual walkers provide:

• Lifesaving blood cancer research
• Free educational materials and events for patients and their families
• Local programs such as Family Support Groups and First Connection, a peer-to-peer counseling program
• Comprehensive, personalized assistance through our Information Resource Center

Light The Night Walk events are evenings filled with inspiration. During this leisurely walk, walkers carry illuminated balloons - white for survivors, red for supporters and gold in memory of loved ones lost to cancer - thousands of walkers - men, women and children - form a community of caring, bringing light to the dark world of cancer. 

• Illuminated balloons, Light the Night T-shirts and a wrist band entitling walkers to enjoy food and refreshments are provided to all walkers who become a Champion For Cures by raising $100 or more to help fight blood cancer.
• The Walk is done at a leisurely pace and take less than an hour to complete.
• Strollers and wheelchairs are welcome. However, for everyone's safety, bicycles, inline skates, wheelie footwear, skateboards and scooters are not allowed.
• Walks take place rain or shine.

So there are basically two ways you can be a part of our team.  You can join the team and walk in the event.  If you are going to walk then you encouraged to raise at least $100.00.  The other option if walking is not possible for you is to donate to a member of our team, or to our team's general fund. If you go to the Josh vs. CML team homepage you can click on the links on the right side to donate or you can scroll to the bottom and officially become a member of our walking team.


We chose the event in The Woodlands cause we figured that would be easier for all to get to instead of the one downtown.  So the event will be at Market Street in The Woodlands on October 23rd.


We see LLS volunteers every time we are at the leukemia center at MDACC.  LLS also funded a large portion of the research that led to the creation of the class of chemo that Josh is taking.  So excited for this opportunity to help others affected by cancer and give back just a tiny bit!

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. 

More blood counts

We once again visited MDACC this morning, and it was rather uneventful.  Josh got his CBC results back, but they didn't have his chemistry results before we left.  The good news is that Josh's WBC count fell all the way to 25.9!  Very excited, and exactly what we predicted.  Remember that normal is 4-11, so we are super anxious to see what happens next week.  Hopefully they will stabilize somewhere within that normal range.

His red blood cell count went up quite a bit, all the way to 4.35 (from 3.95 last week), and normal is 4.5-6, so we are happy about that.  We were also excited that his platelets fell all the way into the normal range to 425 (from 904 last week).  Really praying next week they won't go too much lower.

I guess I kind of felt like today was just an in between kind of week.  We knew it wouldn't go too low, and also that it wouldn't get down to normal, so it just kind of happened.  For some reason today was tough for me, I guess cause we saw quite a few sick kids today.  It is just not something I can get used to.  I've always known it exists, but to be confronted with it again and again, even if only for a few moments has been very difficult emotionally.  And really its not just the kids - there are so many really sick people.  When you walk into these waiting rooms filled with 75 people it is just unbelievable.  And that is just one department, on one floor, in one building, in one city, in one moment of time.  The sheer number of people affected by cancer is staggering and sobering.

We did have a few lighthearted moments today getting to vote for artwork for the MD Anderson Children's Art Project.  So many adorable paintings, all for different themes and times of year.  We voted for this adorable Valentine's drawing of two pudding packs with one asking the other "Would you be my pudding?"  So very sweet.  But it just broke my heart at the same time, to think about what these kids and their families have to go through.

Josh is feeling increasingly better this week.  Very thankful for that.  I'm telling you, though, the man is so ready to go back to work!  I'm fairly certain we are driving him absolutely crazy!  Our toughest adjustment this week has been to adjust our eating schedules around his chemo schedule.  He has to take his meds 12 hours apart each day, and can't eat 2 hours before and 1 hour after the pills.  So for the average person they would take them before bed at 10:30 or so, and then 10:30 in the morning at work.  Well, Josh is asleep at 10:30 in the morning, so we have had to arrange it to take them at 9:00 (which is still keeping him up late in the morning when he gets home).  So we absolutely have to be finished eating by 7, which is often hard to do with three little monkeys around.  And you know Josh and I love to feed the kids, put them to bed, and then eat by ourselves in the peace and quiet sometimes.  No more of that!  I know these are trivial concerns, but it what we are trying to work out at the moment.  So glad he is around to complain about it! :)

With the no computer situation I haven't been able to snap any pics of JP!  The camera was full with no place to download the pics to, so old ones will have to do for now!  We sadly only got pictures of the kids for Easter cause we were trying to save space on the card.  Thanks for the notes and calls this week checking on us, we are doing great!