Hardest week yet

This past week has been the hardest week that we have experienced through this entire process.  After the doctor giving us the two month timeline we can't get that out of our head.  We might as well have a flashing neon light in our room. Two Months Two Months.  Our spirits are crushed lower than ever.  Going to work everyday was a challenge but it is the busiest time of the year for me.  I had to be at work.  Dusty's sister has been there for Dusty while I couldn't and I'm thankful that she has the time.  My best friend and the glue that keeps me together, Elaine, helped to keep me as sane as possible.  Without her, I wouldn't have the strength that Dusty needs from me.  She filled in all the gaps at work for me so that I could shorten my hours and be there for Dusty.  We had many long talks of whether to do the trial or not.  Dusty's strength and weight have decreased below an unhealthy level and we are concerned that the trial could kill him.  He hasn't eaten food in weeks, only Boost.  He is literally dying in front of my eyes.  It's the hardest thing to watch the most important person in your life struggle so badly.  He is the strongest person I've ever met, my EVERYTHING!   Without Dusty, I'm lost.  Dusty saved me in so many ways.  I need him more than anyone knows.  I've been more scared this week than in the last year.  I've tried to stay positive through all of this and really felt in my heart that Dusty would beat this but watching him now, I have my doubts.  It is finally setting in that the love of my life might not be here one day.  You can't imagine what that feels like.

Dusty has been spending more time with Harland and keeping him home from daycare about three days a week.  Dusty is worried that Harland won't remember him.  It breaks his heart.  We had discussed going to Disney a while back but Dusty can't handle the walking around all day at Disney.  We are trying to plan a family cruise for the end of April.  We feel that the more exciting the vacation, the greater chance that Harland will remember Dusty from it.  We've been taking a lot of pictures and had a family session and a few more coming with Jessica V Photography (the best photographer in the WORLD).  Doing everything we can to Make Memories of Us (wedding song).  

Reynolds loves his dad so much.  We talk with him a lot about what is going on and always ask him if he has questions, but he says he doesn't like to talk about daddy being sick because it makes him cry. :(  Ugh.  This little boy shouldn't have to stress out about this.  He should be worrying about being the fastest boy on the playground and who can jump further.  You know, boy things!  But we have be "sugar coatedly" honest with Reynolds.  

Now it is Friday, April 5th and we are in Houston.  We met with the doctor today and the first thing he said when he saw Dusty was, "You look like you've had a rough few weeks."  Great, even the doctor notices how different Dusty looks.  He looks like a total stranger.  He is yellow, has dark circles around his eyes, you can see every bone in his body and he walks really sluggish.  He seems like he is going to collapse at any minute.  The doctor said all of Dusty's vitals looked good enough to start the trial.  He will be admitted into the hospital on Sunday and they will give him a bunch of nutrients through an IV and then start the cathetar and chemo on Monday morning.  To say we are scared is a complete understatement.  

Don't take this blog like we are giving up.  Because we are NOT.  We will never give up but we are starting to lose hope and faith.  It seems that staying positive has gotten us no where.  We will keep fighting but feel defeated at the moment.  

*****

Dusty traded his car in on his dream car a 2007 Shelby GT500.  He is so happy.  He calls it his legacy for his children.  

Two Months....

Dusty and Dad came out to Houston during the week of March 20.  On March 21 Dusty had his bloodwork done and another Pet Scan.  This was THE Pet scan, the scan of all scans!

Friday, March 22, Dusty and Dad went to meet with the doctor to have the results read.  Dad said that Dusty was very ill.  His nerves were shot and he couldn't stop throwing up.  He had taken anxiety medicine but nothing will calm you down right before an appointment that is going to tell you if you are going to life or die.  I was not there so I don't know the specifics but I do know that we did not get the results that we wanted.  The tumor had started to fight back.  It had grown by 35%.  Dusty's spirits took another beating.  He is a true fighter and has been knocked down and gotten back up so many times.  A true Rocky/Russian but this time, he didn't feel like getting back up.  The doctor told Dusty that he  two months left to live.  How can you look a 28 year old in the face and tell him that?  Dusty can't die.  I need him.

The doctor has another option but it is not one that many doctors agree with.  Dusty can a have catheter run up his femoral artery and into his liver through his hepatic artery.  They will pump Oxaliplatin (the only chemo that showed positive results so far) directly onto his liver tumor.  The side effects will be intense and he will be in a lot of pain in the beginning but it may kill the cancer cells.  We were not going to do this treatment because two of our three doctors have said they don't think it will work but they don't have any options.  Plus, Dusty's grandfather has arterial infusion on his bladder tumor and lived for 12 more years.  We talked long and hard about it and Dusty decided to give it a go.  He will start on Monday April 8.

Dusty flew home late that night.  When he walked through the door he looked like a sad puppy dog.  It was heart wrenching.  That night was one of the most difficult nights that we've had in a long time.  We both just held each other and cried.  And I mean CRIED!  We gave it all that night.

Things were looking up!

While on the pill trial Dusty had to travel to Houston once a week for vitals and to meet with the team doing the study.  Some appointments were to just draw blood.  You would think a hospital like this would have a better system then having him fly out here for a day to give blood.?  Just a quick $300 roundtrip for the day, but not to mention his blood draws were at 7:00 am so that caused us to have to throw in a hotel stay.  Seriously!  But, we did everything that they asked of us.  Dusty handled the trial drugs very well.  He didn't get sick often and he was able to get out and about a good bit.  But he did suffer from very strong fatigue.  He stayed in bed mostly all day and would get out of bed for maybe two hours each evening to spend time with the kids but once they went to be, he was back in ours.  His muscles have deteriorated.  The next week I went to Houston with Dusty (Myself or my Dad would go to any major appointments, incase Dusty needed us for support).  On Thursday morning we met with the doctor and Dusty described the pains that he is having in his abdomen and liver area.  The doctor was also concerned with Dusty continuing to lose weight.  Dusty explained to him that he can't swallow.  He can barely drink creamy soup and is now living on Boost Plus.  He drinks four Boost Plus a day to get 1,440 calories.  That is all that Dusty lives on.  The doctor said he wanted Dusty to get in to do a PET Scan and see if it is worth continuing.  He also got us in to do an endoscopy to see what is obstructing Dusty's esophagus.  We started with the endoscopy, all went well.  The tumor is still there but is not active but there was a lot of scar tissue from radiation which was obstructing his esophagus so they burned off the pieces that were sticking out and did a balloon dilation (temporary fix).  The esophagus is like a marshmallow, they can blow it up with a balloon but eventually it will constrict back down.  He was so happy that he was going to get to eat again!  

Then, we went and he had a PET Scan done to see the progressional of his tumor.  The tumor had only grown 5% in four weeks!!!!  IT'S WORKING!  OH THANK YOU GOD.  THANK YOU THANK YOU!  We were thrilled.  The tumor was doubling every four to six weeks.  So a 5% growth in four weeks meant it had to be working.  The doctors said that 5% growth is within the margin for measurement error.  They said to continue the trial and re-stage again in four weeks.  Yay!  Life was good.

On week five of the 8 week trial Dusty caught the stomach bug (I mean, what more can he handle?).  I was forcing water and gatorade down his throat just so that next time he got sick he would have something to throw up.  I called MD Anderson and said that he wasn't going to make that appointment that week, they were fine with it.  After Dusty recovered he was back to not being able to swallow.  I don't know if all of the activity that went on in his esophagus caused it to constrict back down but he could not eat anymore.  Back to Boost.  

The next three weeks went by pretty quickly.  Dusty seemed to be improving so we were excited about the trial.  Dusty was feeling a little better and his color looked good.  

3/20/13