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

Today, we won

Finally I can breathe.  We have been on pins and needles, drug around, played chutes and ladders games, all over the place.  Our emotions have run high and low.  First the battles with insurance, then this week's pre-test, we just kept thinking something bad was going to happen.  We have gotten a lot more bad news than good news.  But today, today was a good day.  Today, we won.  Thank you Lord!

Dusty went to the hospital a little before 8:45 am. They had to hook him up to all the vital machines and get him situated to be there for ten hours.  They had to take his blood once an hour and monitor his heart rate and other vitals.  He did great!  The only thing that he didn't like was being woken up every hour.  He likes his sleep!  I sent him some balloons in his room to cheer him up.  He sounded a little down, but I think he was just tired.  The trial drug's only known side effects strong fatigue and swelling of the hands and feet.

He is back at the hotel and is getting ready for bed.  He has to be back at the hospital tomorrow for about five hours.  He said he is starting to feel "crappy".  I hope he feels better in the morning.

The boys and me are doing well.  We are hanging in there.  I've been rotating who gets to sleep with me.  Well, I decided to let them both sleep with me one night.  That won't happen again.  Tonight, it's just me and my Blue Dog and the boys are stairs.  Reynolds has his first Valentine's Day Dance at school tomorrow night.  I know, kindergarten dance??  Reynolds said, "I need to wear long sleeves because the girls will be inside dancing and the boys might want to go outside and workout.  Because that's what we do!"  Ha!  Oh, is that what boys do.  Funny kid!  Harland keeps saying, "I wanna see Daddy."  It breaks my heart.  But, all in all, we are hanging in there.  I'm drinking MUCH more coffee, sleeping less, and look like a wreck, but whatev!  :)

Quick update

This is a quick update on how Dusty is feeling and where we are with our treatments.

Dusty has completely stopped responding to chemotherapy.  There are no more options to try.  We got accepted into a phase one clinical trial at MD Anderson.  We were ecstatic to say the least.  It gave us hope again.  Hope that we so desperately needed.  Dusty has continued to lose weight and is now down about 75 lbs. (at least he had the weight to lose but now he is getting below healthy).  He can't eat and can't swallow.  We found out that he does have a metastasis that has spread to his right lung but they are not concerned about it at this time because it has not changed in ten months.  His spirits have been lifted with this clinical trial.  We are hoping and praying for results.  We should know February 28 if it is working.

At first our insurance denied the clinical trial, it was the worst beating that we've taken so far.  We thought it was the first chisel in his tombstone.  We were desperate.  After three days of being sick and unable to focus on anything in life, we got the call that Dusty's insurance came through for the trial and they would cover it.  AAAAHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!

We have had many ups and downs through this but this was by far the biggest!

Dusty and my dad left for Houston Sunday, February 3.  Dusty passed all his pre-test and met with the doctor on Tuesday, February 5.  He starts the clinical trial on Thursday, February 7.  He will be taking 1000 mg. of a chemo drug that is in trial.  He takes it daily.  They don't know the side effects yet but know that it does cause fatigue.  Dusty will come home Saturday.  Yay!

He has to travel back and forth to Houston about five times a month for the next 2.5 months.

We are still accepting donations and/or sky miles or hotel points.

Photos taken by Jessica V Photography:
http://www.jessicavphotography.com/index.php/2013/01/30/augusta-ga-family-photographer-hayden-family/

Old day's medicine

I'm sorry that i haven't blogged in a long time.  I've been busy with life.  We have had many ups and downs through the last few weeks.  I want to give everyone a quick update.

In Houston Dusty had a lump arise.  We had the oncologist's PA look at it and she thought that it was a busted blood vessel and nothing to worry about.  Well in October we noticed that it had tripled in size.  We showed our oncologist here and he said it doesn't look like anything to worry about but we should have it removed to be sure.  We had it removed in November.  The pathology came back as positive for adno cell carcinoma (same cancer that was in his esophagus).  The doctor was very concerned that his cancer had spread from his esophagus and liver to his skin.  It is one of the most unlikely places for it to spread.  He was concerned where else the cancer stopped prior to ending in the skin.  They put a rush on his MRI and CT scan.  We were going to get the results on Thursday (12/6/12).  It was the longest day of my life.  I had the doctor call me to give me the news, not Dusty.  I can handle news better and absorb it before relaying the news.  Thursday I waited for my phone to ring.  My stomach was in knots.  I called multiple times and the nurse said the results are on his desk and he will call me after 5:00 when he is done seeing patients.  Should I just show up?  At 5:30 Elaine and I left the office, thinking that he had forgotten to call me.  On the way to pick my children up from daycare, my phone rings.  I pulled into daycare and parked the car.  Our doctor said, "Well, it's not what we wanted.  His tumor in his liver has tripled in two months."  My heart stopped.  "What does this mean?"  He said, "Dusty's cancer is very aggressive and is beating the chemo.  With the amount of chemo that he is receiving, his cancer should be shrinking.  The fact that it is tripling, means the chemo is not working."  I asked if the cancer has spread to any other organs, he said no but there are a few smaller tumors in the liver.  I was at a loss.  At this point, Elaine had loaded her kids up and was sitting next to me in the car.  She text my mom to come get my kids for me.  I asked the doctor what is next?  He didn't have the answer.  I asked about coming in and doing chemo on Monday (today, 12/10/12).  He said there is no need to continue chemo because it is not working.  At that moment reality sunk in; they are giving up, they are pulling the plug, my husband has no other options.  The rest of the conversation was pretty much a blur.  I said goodbye to Elaine and left.  I drove around for thirty minutes.  How do you go home and tell your husband that this is the end?  How do you say, "The doctors don't have hope, but keep your head up???"  Dusty called and wanted me to pick up some side items from Wife Saver because his sister had made his favorite meatballs for him.  He was all excited and in a good mood.  I couldn't tell him over the phone.  I picked up the sides, knowing that we wouldn't have an appetite once I told Dusty the news.  I circled the two cul-de-sacs in my neighborhood twice each.  I called our best friend, Aaron, and asked him, "How do I tell Dusty that he is going to die?"  This does not mean he is dying.  I'll get to the "next steps".  I pulled in the driveway and composed  myself.  I put my smile on and went in.  When I walked through the door Dusty asked, "Where are the kids?"  His face immediately changed and he said, "You talked to the doctor didn't you?"  I rushed to him and held him tightly.  I told him what the doctor said and he just looked like a lost child.  What do you say or do for that?  He had a feeling that it wasn't going to be good when it showed up in his skin.  Honestly, we all did.  We all thought it would be in all of his organs but it stayed contained in his liver.  The location of the tumor is inoperable and they can't radiate his liver.  The amount of radiation it would take would kill the liver before it killed the tumor.  Your liver does regenerate but at a slower pace than the tumor is growing.  It won't work.  Again, feels like there is no answer.

"NEXT STEPS"
1. MD Anderson is working on a clinical trial that will genetically code his tumor.  If they can find the gene that is creating that tumor, they can "turn it off" with hormones and stop the cancer from spreading.  They are in the process of "growing" his tumor and testing for this particular gene.  Only 25-40% of people express this gene but if Dusty does, it will be a game changer (Doctor's words).  So, for now, we are hoping and praying for Dusty to have this gene.

2. We are going to talk with our oncologist in Houston about another chemo cycle.  We have been on the newest, most advanced chemos but they are thinking about putting Dusty on a chemo cycle that they used to use.  "Old day's medicine".  The doctor said he would only do a couple of cycles of this chemo and re-scan Dusty to see if it is working.  These chemos will make him very sick (like chemo in the old days) and he said at some point you have to weigh out quality of life versus quantity of life.  Dusty said, "Please don't give up on me."  The doctor said he wouldn't but if the chemo does not work, he doesn't need to be sick on it.

Chutes and Ladders

The plane ride to Houston was the hardest one that we have had yet.  We couldn't sleep, constantly fidgeted, and worried the whole time.  Nothing helped, not even our anxiety medicine.  We arrived at Houston Hobby at 11:25 pm and caught the shuttle to the Rotary House (hospital hotel).  We were both very anxious and couldn't sleep.  We decided to go on a walk around the hospital to get tired.  We went to Cafe 24/7 and got some chocolate milk and pasta salad (great combo, I know).  We went back to our room and finally fell asleep.  We both tossed and turned and gave up on sleeping in at about 7:30 am.  Dusty's appointment for his MRI was not until 10:00.  My dad arrived at 9:30.  We walked over to the hospital and met my dad and signed Dusty in.  His MRI would take about an hour so Dad and I walked around MD Anderson.  I showed dad the MD Anderson Universe.  He was amazed at how large it is, and how much walking was required!  At 11:15 dad and I arrived back at the waiting room in the MRI center.  Dusty texted me as we walked through the door that he was still in the waiting room in the back and hadn't started.  Ugh, more waiting.  Dad and I decided to go get lunch and then went back to the room to relax.  Dusty called me around 1:30 and was done.  We rushed to him.  We went straight to the surgeon's office for our next appointment, pre-op and the reading the results of the MRI.  We were so nervous.  Dad was doing what he always does and trying to make us feel good by joking around.  They called us back.  The PA came in and talked with us about what the typical protocol is for the pre-op.  She also said that there was a spot that showed up on the PET Scan, and that she and the surgeon looked it over and didn't think much of it but knows that our oncologist likes to be thorough.  She said she feels it is just precaution.  Dusty, Dad, and I felt a huge sense of relief.  We started to feel positive about the entire situation.  Just then, the PA said the results posted and she left the room to read them.  Dusty was shaking.  He just kept rocking back and forth and shaking his legs.  I could see that he was about to come unglued.  I wasn't feeling this way.  For some reason, I had a lot of hope and pressure lift from me.  I wasn't nervous.  I knew we were going to get good news.  I was pumped!  I told Dusty, "It's going to be okay!"  The PA came in with a grimace look on her face but a perky voice.  She said, "Well unfortunately..."  I thought she was going to say, "You're having surgery Thursday."  But she didn't.  She said, "Well, unfortunately there were two spots that showed up on your liver and an enlarged lymph node."  Silence hit the room.  We were at a lost.  I thought is was a joke from the tone of her voice.  It took minutes to settle in.  Dusty just looked lost.  I've never seen such defeat in someone's face.  Dusty just kept looking at the floor and had his hands over his head.  He asked the dreaded question, "How long am I going to live?"  She said that is not the question to ask but that is for the doctors to answer.  The odds against esophageal cancer are so low.  But, she remained positive.  She sent the surgeon in.  He said that there are a lot of treatment plans out there and hopefully Dusty can be treated with chemo and it get rid of the tumors in his liver and lymph nodes and then he will qualify for the surgery again.  I said, "He is young and the liver regenerates, why can't you do the surgery and cut out the section of the liver?"  He said, "Because there are cancer seeds now that are spreading and if you only try cutting them out you will not get the micro cells that you can't see.  You must treat with chemo to get rid of them and then possibly do radiation again if in the end there is only one tumor left."  I was losing it.  I tried so hard to be strong for Dusty.  I held everything in that I could when all I wanted to do was get on my knees and scream and curse to God, Why, Why WHY????  We have done everything right, Dusty lives such a wholesome life.  He is a good person and does not deserve this.  Cancer sucks.  The surgeon and Dusty had a heart to heart on what we can do.  He said he sees miracles all the time and that are unexplained.  Does this mean the odds are that bad that it will only be a miracle?  I'm a math person so I follow stats and odds, but I'm also a spiritual person and I believe in God and miracles.  I just wish this didn't have to be such a miracle and more about odds.  Dusty is a scientists and believes in the science, which is not necessarily a good thing.  He knows the biology behind a lot of it and, let's face it, the biology behind stage 4 esophageal cancer sucks, but he also has faith.  He has to, or we won't win.  I need everyone to help lift Dusty's spirits and help him have faith and see that he can make this.  This entire process has been like a grown up game of Chutes and Ladders.  We almost make it up and then we slip and fall down.  I just want to make it to the "winners squares".

Leaving the hospital we were back to the awkward silence.  Dad didn't know what to say.  He has not been with us to experience such let down.  We on the other hand are used to it.  But, not news like this. I mean, the surgeon actually gave the "5% survival rate" words.  What do you say to that?  You would think by now I would have the words but I don't.  Dusty knows.  We just look at each other and know what we are thinking.  Silence is awkward but common.  Dad did the best he could but nothing could cheer us up.  Dad said, "we just keep going, we fight."  But, after sliding down the ladder so many times it is hard.  AGAIN, I'm giving Dusty a few days to sulk (and myself) and then it is back to the "kick ass" attitude that I have carried with me this entire time.