Summer, Update and Hospice

Well a lot has happened since I last blogged.  I had to take a break during the summer and focus on my family.  The last we left it was that the trial was continueing on.  We did the treatment after the scan and everything went the same.  We came back to Augusta and he slept and slept and slept, like he always did after treatment.  Three weeks later, just when he got to feeling better, it's back to Houston.  Remember we were doing treatment every three weeks and scans every six.  So the next trip was just treatment but no scan.  This was the worst treatment yet.  Dusty did not do well with it.  He had screaming pains.  One night his pain escalated so suddenly that he woke screaming.  It was around 3:30  am, I jumped off of my little couch bed and ran to his side.  He was screaming, "This is it!" and started saying his goodbye to me, telling me he loves me, thank you and goodbye.  I started yelling for help and hitting the panic button.  Dusty started convulsing so I jumped onto the bed and held his back and thighs in the fetal position to hold him still.  The nurse came running in and quickly pushed some pain meds.  It took about 30 minutes for his pain to get to a manageable level.  He really thought it was the end.  So did I.  I've never been more scared.  They slowed down the chemo and extended it from 46 hours to 48 hours on a slower drip.  The next three days were up and down with pain management.  We came back to Augusta and he slept and slept and slept.  Since the last experience with chemo and his pain levels were so difficult my mom decided to come with us for support.  She was flying west anyways so she stayed in Houston with us for a few nights.  We were getting results during this visit, which makes everything seem like it's moving in slow motion.  Time just ticks when scanxiety is up.  Dusty had his scan on Monday.  Monday night we just went back to the hotel and did what we normally did, medicated to sleep to try to speed up time.  Tuesday morning my mom arrived.  Our results appointment was in the afternoon so we had to deal with scanxiety all morning.  We went into to the doctor's room and waited.  It seemed like eternity.  Mom was trying her best to stay positive.  We were skeptical since he had lost so much weight and had been very fatigued.  Dusty had lost 18 pounds in 6 weeks.  The doctor came in, sat down and said, "I wish I had better news."  Damn.  Dusty just bowed his head.  We knew this was the end.  Our last shot.  Dusty said, "What now?"  The doctor left the room.  He came back with some papers on a new trial that they were offering.  He seemed like it was a shot in the dark.  He didn't have confidence in his demeanor when he was presenting it to us.  I think he just didn't want to say that he didn't have anything for us.  I'm sure it's hard to tell a 29 year old father of two that he is going to die.  I asked if he knew if Emory had any clinical trials going on that we could get into.  He left the room to check into Emory on his computer.  He came back in with two clinical trials that Emory was offering that Dusty could try to get into.  Of course we asked the dreaded question again, "how long?"  I'm not going to focus on his answer.  They have given us timelines since December that we have continued to overcome.  Dusty is not the traditional EC patient, he is half their age.
We felt good about going to Emory.  It is a way to stay close to home and not miss valuable time with our kids but still continue the fight.

Next we decided to take some time away from cancer and live a normal life.  My aunt and uncle let us use their beach house in Edisto so we went with Dusty's mom, sister, brother-in-law, niece, nephew and our boys.  Dusty was feeling much better since it had been five weeks since his last chemotherapy treatment.  He took a low dose steroid to help with energy and appetite.  We had a wonderful time in Edisto.  We cooked great meals, played cards, sang karaoke, went to the beach, and enjoyed the most colorful sunsets nightly.  On Friday a friend was able to get us a free backstage tour of the Charleston Aquarium.  It was one of the most amazing experiences.  We were able to go into the sea turtle rescue clinical and see up close all the injured sea turtles.  We got to hold and pet many animals.  It was really cool.  That day will forever hold a special place in my heart.

Sunday we left Edisto and went to Charleston and boarded the Carnival Fantasy cruise ship.  My parents and grandma joined us on the cruise.  The Make A Wish foundation and Carnival gave us the Make A Wish rate for a five night cruise to the Bahamas with all excursions included, spa package, and two bottles of wine.  Dusty was such a trooper.  I know he didn't feel well but he didn't show it.  Monday we had an "at sea day", Dusty went to the pool and swam with the boys, watched Harland dance on the stage and watched Reynolds go down the watersides 500 times!  Tuesday we ported in Nassau and went to Atlantis' water park.  Dusty didn't do well with all the walking that was involved in the park so we eventually got settled into the kids zone and let the kids go wild while we lounged in the shallow waters.  Wednesday we ported in Freeport and went to swim with the dolphins. The kids loved it and Dusty was feeling better on this day.  Thursday was an "at sea day", Dusty stayed in the room on this day to rest.  I took the kids to the pool with my parents and spent most of the day going down the water slides with the kids.  My parents took care of the kiddos while I went to the spa to receive my complimentary spa package.  Well....I drank a little too much that day and slept through my entire massage!  Hey, I deserved a day to kick back and have some (many) drinks.  Dusty joined us for dinner.  Friday we ported back in Charleston and headed home.  We had another memorable vacation.  Cancer was not on or in our minds.  We enjoyed our families and made many memories.  "Making Memories of Us" (wedding song)

We returned from such a "high" to a major "low".  During the two and a half weeks that we were gone and thought the paperwork and release forms had been completed between MDA and Emory had not been done.  They were waiting on more papers to be signed so they never sent our file to Emory, therefore we didn't have an appointment yet.  I was furious.  Lets face it, Dusty is not getting better!  And time is not on our side.  Finally the medical records were sent to Emory and we got on the list for an appointment.  We couldn't get in for six weeks.  It was horrible.  The longest six weeks of our lives. Dusty was very ill, very weak, slept 23 hours a day, and didn't eat any food.  I was lucky to get 1050 calories down him a day, strictly liquid.  We went back and forth with starting hospice or not.  I was in constant panic mode.  I couldn't sleep at night.  I kept my hand on his chest and felt for breathing all night long only to have to get up early and take care of the kids.  I was at a breaking point.  I understand that Dusty wanted to hold on to the idea of Emory, to feel he gave every option a shot.  He thought that if he accepted hospice he was giving up.  You can't be seeking treatment and on hospice at the same time.  

The day finally came to go to Emory, August 27.  Hallelujah Hallelujah!   We went, met with the doctor and the trial coordinator.  Everything seemed great.  The trial uses antibodies instead of chemo to kill the cancer cells.  They are going to test his tissue (biopsy) to see if cancer cells have a protein that the antibodies attach to and then release a toxin that kills the protein along with the cancer cell.  The side effects are minimal because this process only kills the cancer cells, not healthy cells too (like chemo).  We signed release forms for MDA to send Emory his tumor biopsy.  They told us that it takes two weeks to complete the tissue and test and that the trial would start the last week of September.  Ugh!  Four more weeks.  Time is against us.  I asked the doctor if he thought Dusty would still be alive in four weeks.  He said he did not know.  We left Emory with a positive attitude and felt like maybe we had another chance.  We were supposed to find out on September 10th if he had the protein.  I called on September 11th to find out if they had any answers for us.  Ironically later that day I get an email from the trial coordinator that MDA needs us to sign their release form to release the tissue sample.  WHHHHHHAAAAAAATTTTTTTTTTT???? @#$%***@#$%**  YOU MEAN TO TELL ME FOR TWO WEEKS (AGAIN) NOTHING HAS BEEN DONE DUE TO STUPID PAPERWORK???????  I lost it.  Literally lost it on the phone.  I asked her when did she find out that they needed the paper signed and why am I just now hearing about this.  She wouldn't give me a straight answer.  I pulled up my email and the attachment that she forwarded to me on September 11 was dated from MDA on September 3.  She avoided all of my questions.  I wanted her to take responsibility that she royally screwed my husband's chance at probably getting into this trial.  So now, we are waiting again for the results of the test.  Then she tells me that he can't start the trial at the end of September because there are not any openings.  He is on a waiting list to get into the trial.  They are playing puppet with my husband's life.  It's a joke.  I could have reached through the phone and strangled that woman.

A few days went by of Dusty getting worse and worse.  He had taken a few hard falls and could barely walk anymore.  He has been refusing nutrients and losing more weight.  We made an appointment with our local oncologist to see about getting a feeding tube placed to try to build strength for the trial.  The doctor highly advised against the feeding tube.  Said that it can be painful and cause difficulties and infections.  It could cause Dusty to eat more pain pills because of discomfort which would not lead to a better quality of life.  Dusty has developed tumors that you can now feel with touch.  The doctor said that his body is completely covered with tumors and he will be too weak to start the clinical trial.  Emory has not done a PET scan so they don't know the magnitude of how advanced Dusty's cancer is. The doctor does not think that Dusty will make the trial.  He suggest that we start hospice and enjoy what life he has left.  Dusty said he wanted to make it to Christmas.  I said, "Lets get a tree!"

We started hospice that day.  They changed his pain meds from a bunch of short acting pills every few hours to 12 hour pills twice a day.  This helped Dusty with his energy.  He became much more alert.  Hospice has been such a relief for me.  It gives me a "go to" anytime I have concerns.  We have an awesome nurse that I'm comfortable with she is a great support for my family.  We've talked with the Chaplain and she is working with Reynolds on opening up.  Reynolds will not talk about his dad or his feelings.  I worry about him a lot.  All in all, hospice has been a fresh of breath air.  They are making Dusty's quality of life much greater.  And, if Emory every gets their shit together and we can start the trial, all we have to do is revoke hospice.

Dusty was able to go to my mom's 60th birthday party that weekend.  Then the next weekend we celebrated Christmas.  The hospice nurse gave him a low dose Ritalin to help with energy on days that we want him to be up and alert.  He sat on the couch all day Saturday and Sunday.  He enjoyed Christmas with the kids and lots of family and friends.  It was a magical Christmas!  Everything was perfect.  We enjoyed lots of gifts sent in from people all over the United States, Christmas carolers, Mr. and Mrs. Claus showed up and our family photographer, Jessica V Photography, came and took pictures both days.  It was great.  The only difference in the real Christmas and our Christmas was the weather.  Other than that, it was Christmas!



Dusty continues to lose weight.  He is down to 127.4, total weight loss to date 133 lbs.

We are living day by day!  Dusty is showing more love and opening up again.  We are cherishing every moment.  Life is short, Love is grand!  Hold your family extra tight and never forget to tell the ones that you love, "I love you!"

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.  

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