Coming Out of a Nighmare

How quickly things change......

Thursday morning we woke up early to take Matt to get a bone scan and ct scan.  As I was getting ready I heard Matt tripping and banging against the wall.  I found him in the bedroom and he was extremely dizzy and unsteady on his feet.  In my mind I was trying to figure out how in the world I (under 120 lbs) would ever be able to catch Matt (250 lbs) if he were to fall, or even worse how in the world I would ever be able to get out from under him if he fell over on top of me!  LOL!

I called the drs answering service and a few minutes later the doctor called and sent us to the emergency room.  He told us that Matt could have his ct scan there and they could also check out what was going on with him as I had been complaining to his nurse all week long about Matt's symptoms.

I asked Josh (my son in law) to go with us to the er and right after we arrived and were placed in a room Matt began to spit up lots of very thick, very red, and very scary blood.  I think it freaked out the nurse and it most definitely freaked out Josh.  He said, "holy cow this is just like 'House'!"  :)  I wanted to say, "welcome to my nightmare Josh!"

The blood, we believe, came from the back of his sinuses where it is all torn up due to the chemo drug he takes with the trial drug.  I say "believe" because no one really checked things out to see if it was coming from some other place.

Matt's oxygen level was very low so they put him on oxygen, did a ct scan and x ray and then admitted him into the hospital.  I still am not sure why they admitted him as once we were up on the floor we never saw another doctor from the hospital.  They told us that the oncologist, the partner of Matt's trial doctor, would come in and go over the ct scan results with us and that was it.  We waited and we waited and we waited and he never showed.  Finally I asked for the ct results.

After a sleepless night with many more blood spewing incidents, the oncologist came in and told us that we needed to see the research doctor the next week and he would tell us where to go from here.  WOW what a complete waste of time!!

Then we were told that we had to wait for the pallative/pain doc to come in and give us some direction on how to manage Matt's symptoms.  Again we waited and waited and by 5:30 that night we told them this was not how we wanted to spend Matt's last days and we checked out of what I like to call the "Nightmare Hotel".  

As we were walking out of the hospital room the doctor finally arrived.  We sat down with her and it is obvious that she wants nothing more than to go home and be done for the weekend.  She offered absolutely nothing.  She just nodded her head as I listed all of Matt's symptoms and said that that was not a good quality of life.......REALLY!!!!  She told him to drink caffeine to stay awake and then she wrote a script for two meds.  One med is to help keep him awake and the other is to help his appetite.

She told us nothing about the meds, how they work, how to take them, what the side effects were, NOTHING.  When I asked her what I should look for or be concerned about she said nothing.  When I looked online about these two drugs I found many side effects for each and was left wondering if they would cause more trouble then they were worth.  I have yet to get them filled.

We left the hospital and went back to Brittani and Josh's and our kids came from home and Logan came from Utah.  We had a nice weekend and just tried to enjoy our time together.  Matt was awake more and still had some bleeding issues, but they were fewer and less severe. On Saturday he began to eat a little more and each day since he has eaten a little more and has been awake more.

We are home now and today was a good day.  My sweet mom went and bought us Chinese take out for lunch and surprisingly Matt ate almost all of it.  I was so happy I could have cried!  He went for a short walk, sat outside for a while, and has been mostly awake today.

Matt has decided he will not stay on the trial as the ct scan showed more progression of the cancer and with the excessive bleeding it is just not worth it.  We meet with the research doctor this week to discuss his options, if any, and then we will go back to Cancer Treatment Centers of America and meet with an oncologist there to get his opinion as well.  So the next few weeks will be a time to really pray, meditate, and discuss if Matt will continue to try and fight or if the time is here to be home and spend his last days with family and friends.  A very difficult decision but one that only Matt can make.  Please continue to pray for us and specifically for Matt that he will know what is best for him.