Things just got a whole lot worse..

We woke up in good spirits again today.  I guess we are starting to realize it is what it is and there is nothing that we can do about.  We've started to "ride the current".  I did my usual, got all dressed up, made us both berry, mango, and banana smoothies, and woke Dusty up.  He quickly showered and got dressed.  We had an appointment with our GI oncologist.  We were in a great mood.  I thought we were going to hear good news today and give us our chemo start dates, chemo brands, and get us all in order to start our cure.

Our favorite nurse called us back.  We did dusty's vitals and then went into one of the patient rooms.  She told us about all of the events coming up that we could take advantage of: on Thursdays the museum is free, on the first Tuesday of the month the zoo is free, and we are within "free shuttle" distance to Miller Outdoor Theatre and Herman park, where they host many free shows.  We were excited to have more info on things to do.  She also showed us her band on Youtube and gave us her cell number, anytime we wanted to go out, to call her and she would tell us where her band was playing that night.  She is so great!
Next came a student doing research.  They love Dusty.  He is a young rare esophageal cancer patient.  They ask us for samples everywhere we go.  They did extra biopsies and always take extra blood for research.  Dusty is glad to help research, being a biologist.  She had a packet for us to fill out and asked us a ton of questions.  When Dr. Ajani came in she had to leave.  Dr. Ajani is such a genius that he isn't a man of many words.  He pulled up the endo with ultrasound and said that Dusty had two tumors 4+ cm in size.  He also noticed a spot on his liver.  Here we go again.  He said Dusty's cancer was very advanced and has been there for a long time.  I could see Dusty beginning to melt so I stepped in.  "Are you saying this is stage 4?"  Dr. Ajani said, "No because it is still localized."  Meaning, it hasn't spread to other organs.  But, I thought he saw something on the liver?  I just took the diagnoses he said because I didn't want to hear otherwise.  He said, "It is a deep stage 3.  Due to Dusty's age he does still qualify for the surgery."  Thank you Jesus.  He said there are a few more very small tumors developing in the general region and he wants to change the plan.  Not this again.  Back to the unknowns.  He wants us to go back to Augusta and do 9 weeks of three different types of chemotherapies without any radiation.  There is a serum in your blood that can encourage metastases.   A normal person's count of this serum is 0-3, a smoker is 3-6, but Dusty's is 54.  He doesn't understand why Dusty's is so high.  I'm sure they can't wait to pick and prod him some more to find out why.  The doctor said his blood is trying to spread the cancer.  You've got to be kidding me.  So not only is cancer trying to kill him but now his blood is trying to kill him.  I asked why he didn't want to do radiation along with the chemo and he said, "Because it will kill him."  Let's not do that.  When you take radiation it makes the cancer cells angry and want to spread.  With Dusty's blood serum counts so high he doesn't want to risk spreading.  He wants to just do chemo to kill the cells that are there and stop spreading.  So, we will do 9 weeks in Augusta, then move back to Houston and continue with the original plan (6 weeks of strong chemo and proton therapy (radiation), 6 weeks in Augusta to regain strength and then 2 weeks back in Houston for the surgery).  We just went from 14 weeks to 23 weeks.  Dusty is sad that he will be in Houston for Reynolds first day of kindergarten.  :(
The doctor left the room and the student came back in.  All I wanted to do was scream at her.  Really, are we really doing this.  We just got horrible news.  The last thing we wanted to do was answer questions about family history, diet, and living environments.  We were over this place and wanted to leave.  We walked back to our hotel room and didn't say a word.  Neither of us could talk.  I finally broke the silence and asked him what he wants from me.  "Do you want me to talk to you about it?  Do you want me to be quiet?  Do you want me to cry with you and hug?  What do you want me to do to help you?"  Being a caregiver is a difficult job.  I don't know how to do it and I'm not good at it.  I never know what to say.

The rest of the day was very hard.  We did a lot of crying and had many quiet moments.  We decided to  each take a Xanax and take a big nap.  We woke up refreshed and clear minded.  I think we have accepted this as a good thing.  We get to come home and do many weeks at home with the love and support of our friends and family.  But, we still have to come back and continue where we are ending today.

Our survival rates are low but our spirits are high and Dusty's strength is high.  He is young and WILL beat this.  He has to.  As for me, I can't breathe, my world is caving in, and all I want to do is sleep.  I'm scared to death, of death, of losing my life, my husband.  Please God, I need you, I need him.  

http://www.everydayhealth.com/esophageal-cancer/progression-of-esophageal-cancer.aspx