Time is a blessing!

Time is the greatest healer.  Things have gotten much better at our house.  Steve is back to work and he seems to be getting more energy everyday.  The lump on his neck behind his ear turned out to be a swollen lymph node.  His body had been through so much in trying to fight all the bad chemicals they were putting in his body, that one of those lymph nodes just got clogged up.  It is so nice to see him come back to us.  That was so scary for awhile there.  I must admit, I kind of freaked out a little.  Just when things were suppose to be getting better, he got worse.  It makes us that much more grateful for his recovery and his improvements.  Our summer has been cut short for us.   It feels like it just started and school starts here in 3 weeks.  So for the next 3 weeks we are cramming in all the fun stuff we can.  We went to Bear Lake last weekend, we are headed to a friends cabin in Midway this weekend.  Steve has rented a 6 person razor to take the family on an excursion next weekend.  Then Sierra and I are going to St. George to see Beauty and the Beast at the Tuacahn Theater for a girls weekend, and the boys will go to the Wind Rivers for a canoe trip over Labor Day weekend.  We are trying to fit a whole summer of fun into just a few weeks.  I think we will all need a nap after it all.  We have really changed how we look at things.  One of the great blessings cancer gives you is a change of perspective.  We are so grateful that Steve is NED (no evidence of disease) right now, but we have no guarantee that it will last.  We have decided to do all we can to spend time with our family and friends that are dear to us and live each day to the fullest.  There is no time to waist!   We want to make memories and develop relationships that will last forever.  Each day is a blessing we are so thankful for. 

The race is not over

Yes it's true, I am not a good blogger.  I really didn't think to many people checked on the blog until I had may people texting and asking for a follow up from my last post. I went back and read it, since it's been a while, and I did leave things undone.  So sorry for that.  All the results that we had done while we were back at the Huntsman came back good and clean.  That included: CT of his head and neck with and without contrast, blood tests, blood cultures to look for infections, echo cardiogram with a bubble test to see if he had a hole in his heart, a short EEG, and a LONG 24 hour EEG.  I mean that was a long 24 hours.  They were looking to see if he was having any type of seizure activity.  Again, everything came back good.  So, what do we do from here?  He had a team of neurologists visit him, a team of oncologists and many other NP's and PA's.  He was seen by many people while we were there.  That was very comforting for me.  To be honest, this was kind of freaking me out.  He had never been like this before through it all and now all the sudden things just went crazy!   We have more scans on Tuesday so maybe more answers???   In my mind, it was like running a race.  When we started, we knew where the finish line was.  By the end we were exhausted and tired but we knew the end was close so we gave it our all to make it to the finish line.  The only thing is,  as we crossed the finish line something happened and our race wasn't over quiet yet.  We were asked to keep on running not know where our new finish line waited.  Here we are still running.  Steve seems to improve with each day.  He doesn't have much energy and he still forgets things he's trying to say.  He will still repeat me after I say something to him but that is getting better.  For awhile there I thought I had a new parrot. I think he realizes that things are still just not right, but he doesn't know how to fix them.  It seems to be frustrating to him.  When we were in the hospital for our first ER trip, my brother in law came to give Steve a blessing.  In that blessing he said that everything will be alright.  I am counting on that!  That is what I keep reminding myself when the stress of all this comes crashing down on me.  I am so grateful for the priesthood.  Every blessing that Steve has received through all of this seems to be for me as much as for him.  To me, that shows me that I have a loving Heavenly Father that is aware of even my small heartache through it all.  How grateful I am for that.  I don't know how I could do it with out HIM!

We went to the demolition derby last night.

Couldn't help but relate to how this car looks. 

That's about how I feel these days...

This to shall end

Just when we thought things would start to get back to normal they spun out of control for us.  We got home a week ago today and for the first few days things seemed to be going along just as usual.  Lots of nausea and fatigue, but that was pretty normal for what Steve had just been through.  On Wed. the nurse from home health came to draw labs and to give him some fluids.  I had left to run kids to soccer and basketball when the nurse called and said that I needed to come home and take Steve to the ER.  He was not making any sense and he was very confused.  I hurried home and headed up to the hospital.  The doctors there were unfamiliar with bio chemo and the effects. It was very frustrating.  It was very scary for me because this was not normal for him. This kind of thing has never happened.  He couldn't finish a sentence or a thought.  He would make crazy sentences and switch words around and even letters in words.  He didn't know what day it was and he couldn't write what he wanted.  They did a brain MRI and chest x-ray, blood work, and an EKG.  All of which came back good and clean.  So they sent us on our way.  AHHH!!! he was still not able to make clear sentences.  They had him sign out and he could not write the date or time.  I looked at the nurse and said, "Can't you see he is not stable and not okay?"  She just said, "We have done all we can do here.  We are an ER so if he needs more help you'll have to go some where else."  I was not comfortable at all leaving with how he was at that time.  I called down to the Huntsman and talked to his oncology team.  They felt like he needed to be seen by a neurologist.  They recommended that I take him down to the University of Utah medical center ER.  So off we went to the 2nd ER for the day.  I took with me the disk of his MRI and his EKG and copies of his lab work so all that wouldn't have to be redone.  When we got down to the U, it was crazy.  We sat and we sat and we sat for over 3 hours with nothing being done.  When we first got there, Steve was doing much better so they wouldn't even give us a Neuro consult like we really needed.  Talk about more frustration!  After about 2 hours of just sitting and waiting, Steve started to lose his speech again.  I asked to nurse to come in and see for herself.  Finally they decided to get a neuro consult.  The neurologist came in and did a series of tests and felt like they should rule out some big things.  By now, Steve had had enough.  He was done.  They didn't seem to know much about Bio Chemo either.  In fact they said they had to look it up and read up on it when we were there.  He had lost all confidence in everyone there.  He decided to check himself out AMA (against medical advice).  Talk about a bad day!! By the way, it was our 15 year anniversary, one we won't forget anytime soon. We got home around 1:00 am.  We were both spent.  Maybe a good night seep would help?  We gave it a day, and when we woke up this morning, things were still not good.  Still couldn't form complete sentences and he was still really confused.  I talked him into coming back to the hospital to finish the tests that they wanted to run but couldn't because he ran.  I called the on call oncologist to see if we could by pass the ER this time and just get admitted.  I was afraid if we had to go the the ER again, that he wouldn't last the wait that is inevitable at the ER. Luckily he mad that happen.  So, here we are back at the Huntsman again.  So far today they have done a chest x-ray, blood cultures, blood testes, head and neck CT, 30 min. EEG, he has been evaluated by the neurology team and is now hooked up for a extended EEG that will last all night.  We have accomplished more in the few hours at the Huntsman than we did all day at two different ER's.  They are just on it here.  There is a chance that we might not find anything but a least we will be able to rule out the big stuff.  We should have more answers tomorrow but for now, we have one unhappy guy who is just so tired of all this stuff.  He has been through so much already and it just seems to keep going on and on.  This to shall end.  It just seems to be an endurance test at this point.