Good news but not great

This morning was a difficult morning.  We didn't have much to say to each other and there were a lot of blank stares.  I kept trying to tell him that everything was going to be okay, "No matter what, we would continue to fight."  It's easy to say but we are physically and mentally exhausted.  I kept reiterating how much better he has been feeling.  I told him, "Your color looks so good, your weight is coming back, your appetite is up and you have energy again."  Something has to be working.  It's hard to reassure someone who has been let down so many times.

We went and gave blood and then walked over to the hospital hotel restaurant and ate breakfast.  Dusty had two eggs, some bacon, hash browns, and french toast.  I told you his appetite is up!  I couldn't eat, I just drank multiple cups of coffee.  Time ticked.  Finally, it was time to go meet the doctor.  While we were walking down the skybridge from the hospital hotel over to the hospital I held Dusty's hand tightly.  I chuckled humming the Darth Vader song in my head as we marched!

We signed in and didn't have to wait long (thank God).  They called him back for vitals and put us in a room.  Dusty gained 7 pounds in 2.5 weeks.  I did a little celebration dance.  I give myself that credit.  Hey, if you had to fight Dusty as hard as I did to eat, you'd give yourself credit too!  The PA and a student came in, like always, to ask questions on how he's doing and any symptoms.  All pointed to positive.  Dusty has made great improvements and is doing well.

The doctor came in a had mixed emotions on his face.  Here we go again.  What more can we handle?  The doctor pulled up Dusty's PET scan and showed us where his liver tumor has SHRUNK significantly.  Whooooooooo HOOOOOOOOOOO!!  HiP HiP HoOrAY!  Oh thank you Jesus!  The doctor was very pleased with the decrease in size of the tumor.  He showed us side by side images of the scan two months ago and the scan yesterday and you could visibly see the difference.  The liver tumor was noticeably smaller.  But then, yep, there's a "then", he showed us more "spots".  There are now two more tumors in his liver and two tumors in his right lung.  I just lost it crying.  How can he be getting worse when he looks so great?  The doctor turned his attention to me and said, "This is good news but not great.  The good news is that the tumor that was going to eventually kill Dusty is shrinking."  He said we need to continue on the trial and get the "beast tumor" under more control and then start worrying about the other tumors.  I asked if we are pumping chemo directly into the liver, how can other tumors form in there?  Could they be a different type of cancer?  He said no, that cancer is constantly dividing and spreading.  I asked if we should pump the chemo into his liver and then roll his body around to coat all of the liver?  I met someone here that had stomach cancer and they did this with the rolling around of the body to coat the organ.  He said no.  I tried to reach for questions but was in such shock I couldn't think of any.  I just sat there crying.  Dusty was so sweet to explain to the doctor how high my hopes were.  The doctor re-explained that this is still good news.  I asked about the lung and if he needed to be treated for lung cancer now.  He said, "Let's focus on completely controlling the tumor that is trying to kill Dusty first."

Scanxiety

Well, here we are!  The night before we get results.  Scanxiety is at its highest.  We are trying to stay busy and not think about what tomorrow holds but it is hard.  Dusty's legs are constantly shaking and he keeps taking sudden deep breaths.  I can tell he's nervous.  When I ask him what's wrong he just looks at me like, really?, but I don't know what else to say.  Just trying to fill the silence.  We went out to eat and now we're back at the hotel.  We are going to medicate and try to get some sleep before results tomorrow.  We see the doctor at 10:50 central time.  This will be the longest wait in a waiting room yet.  I'm feeling very optimistic and excited but I'm also nervous that we won't get the news that we are expecting.  We are hoping for NED (no evidence of disease) or shrinkage.  Ha!  Every time I say that I think of George on Seinfeld.  I think I'm the only woman in the world praying for shrinkage!  :)  

I will keep you all posted.

Love,
Stacey

He's Back!

Dusty did great through the first treatment.  He ate well and had little discomfort.  When we returned to Augusta things got much worse.  I had to return to work because it was Master's Week.  The first few days Dusty was completely out of it.  He was hallucinating and had no concept of reality.  I couldn't tell if he was dying or if he was overdoing on his pain medicines.  I bought a pill organizer and things quickly turned around.  I think he was taking his pain medicines and forgetting that he took them and taking them again.  It was so bad that I had to have friends and neighbors go into my house prior to me arriving so that I wouldn't find him, in case something had happened.  But once the medicine was under control he quickly started getting better.  He started wanting to get out of the house.  His car has completely given him life again.  He wants to drive it daily and he loves to tinker with it.  Each day got better.  

We returned to MD Anderson on April 28 for the next round of chemo.  Dusty gets admitted into the hospital on day one, they start fluids and vitals, day two they insert the catheter up his femoral artery and into his liver, they pump chemo directly into his liver for two hours, then they take the catheter out and do 44 more hours of chemo through his chest port.  They give him a lot of steroids while he is on chemo, which gives him a big appetite.  He eats really well while in the hospital.  The doctor said that we have to keep his weight up this go round.  He lost 14 more lbs since his last treatment, bringing him down to just under 160.  We tossed up the idea of doing a feeding tube but Dusty wanted to give it one more round on his own.  Doing the feeding tube will alter most of our summer rituals with the children.  We are trying to keep life as normal as possible for the children and swimming is a huge part of life for us.  Dusty really wanted to try one more time.  So, I have quit working and started staying on him about his diet.  I started a daily food diary and it has helped tremendously.  Dusty is a whole different person.  His weight is stable, his color is perfect, his energy is back up, and he is eating.  His swallowing is almost completely back to normal.  He only  has trouble with breads.  We definitely think that the trial is working.  He is completely coming back to himself!  

Dusty got baptized on Tuesday, May 14!

We go back to Houston on Sunday May 19, Dusty will have a scan on Monday and we will get results on Tuesday.  Our scanxiety levels are out of this world.  We have our hopes higher than they have been this whole year so if things haven't shown improvement this time around we will be let down harder than ever.  But, ask anyone who has seen Dusty in the last month, HE'S BACK!  He's the old Dusty!!!  It's got to be working!  

If everything is working, he will be admitted into the hospital on Wednesday and undergo another 46 hour treatment and we will be home on Sunday.  Celebration time!

Please continue your prayers.

Thank you!

I will be giving updates next week as we get results.  I'm no longer giving detailed stories, just updates.  It became like I was telling a story and not living my life.  Mentally, I wasn't accepting what was going on and I wasn't doing well.  Reality sucks but it is reality, not a story.  Thank you for your understanding.