#25 Round One, down but not out

This has been a month full of surprises, both good and bad.   It started out great!  Our son, Jeff (who the English girls for some reason call Uncle Joe, lol) surprised us by flying down to see his dad before he was unable to have visitors.  He conspired with the Clark's to get here and was waiting at the RV park when we got back from seeing the doctor.  It was hilarious.  The office people came to get us saying they had a package at the office they wanted to be sure was ours.  So off we went.  We both walked in and I looked around for the package.  Of course Jeff was standing in front of me and my brain thought he was a park employee.  He said something and all of a sudden it clicked.  He laughed his ass off because his mom didn't recognize him. I started crying..the office people were crying lol.  It was so unexpected and such a wonderful thing for him to do.  It meant a lot to me, but more importantly it meant so much to his dad.  Thank you, Jeff, making our month start out right.  His sister wants to come over from England, but I have told her to wait until dad is better.  Not much she can do at this point and he'd like to see the whole family.  It will be easier when we get the house. We have some great kids.  His grandkids have called him to check on him, too.  Couldn't ask for more.

Can't blame him...yuk 

LJ has been going each week to his treatments.  Five days of radiation and one day of chemo.  He was doing fairly well and then he wasn't.  He tried like hell to drink the shakes I made him.  I made him wonderful things like Avocado mixed with ensure...yuk.  Or his favorite, blended Taco Bell because he wanted something different... double yuk.  I thought about blending a burger and fries, but he said no for some reason.  The radiation did such a number on his throat he couldn't get anything down very easy.  Plus everything tastes awful, and not just because I have no culinary skills.  He is getting a broader area treated since they are doing the lymph node, his throat and his thyroid.  We found ourselves butting heads...me frustrated because he couldn't get the shakes down.  Him frustrated because he knew he was trying but just couldn't do it.  In one week he lost 8 pounds, a total of 20 over three weeks.  In my eyes he was starting to look bad and was having difficulty walking and talking.  Some of it I expected, but not as bad as I was seeing.  You have friends who have gone through this and you are told what it will be like.  I don't know if people can actually put into words what it's like.  You think you understand, but you really don't.  Not something I would want my worst enemy to go through, I tell ya.  He's a tough guy and it's heartbreaking to see him trying to keep a brave face when you know he's miserable.

On Monday of week four the doctors told us he needed a feeding tube because he was losing too much weight.  Both of us were trying to avoid it so we told them to give us another week.  We had changed his shakes to a higher calorie one and he was getting the recommended calories each day now.  It is ultimately his choice so the docs backed off.  If others can do it without a tube, then we can.  Then Wednesday came.  I was gone on an errand and LJ apparently tried to take a pill.  It got stuck in his throat.  He told me when I got home that he choked on it and coughed for a good thirty minutes.  He felt like he had damaged his throat more and couldn't even swallow water.  He was tired and not feeling well so went to bed early having eaten very little that day.  On Thursday he tried again to "eat" and drink water to no avail.  He asked me to call and make an appointment to get the feeding tube put in.  So I did.  But the best they could do was a week out. By late that night he was obviously dehydrated and suffering.  There was no way he could wait a week, but his dehydration needed to be addressed immediately.  He looked like he had aged 10 years overnight.

So off we went to the Emergency Room at Banner Estrella Hospital, a hospital I highly recommend if you are in the west Phoenix area and need one.  The ER was busy, but they recognized he needed to be seen.  We waited no more than five minutes before seeing the triage nurse.  The last thing I wanted was for him to be around a bunch of sick people with his immune system compromised, so we found a quiet spot away from everyone.  It was about fifteen minutes after that we were in a room in the back.  They immediately started him on IV fluids.  He recovered a bit, but wasn't responding like they thought he should.  His heart rate was staying up which told them he was severely dehydrated. Finally at about 5 am they told us he was going to be admitted and I should go home and get some sleep.  Since he was sleeping I decided they were probably right.  

I made it back to the hospital after noon on Friday.  He had just made it to a private room.  They put him in an observation ward, continuing with the fluids.  He was visited by his Nephrologist who had some good news for us.  Since he had been receiving the IV, his kidney function had improved.  Our visit to him two weeks before had indicated his kidneys weren't as strong as the doctor had hoped, but this meant they were better and there was less concern about his forthcoming kidney surgery.  Apparently he had already started being dehydrated early in the process of radiation and chemo.  We thought he was getting plenty of fluids, but he wasn't.  Since he was on an IV, the Nephrologist upped the amount of water he was getting.  In a day you could already see a difference in LJ.  He looked better and was able to talk, although he was still very tired.

The doctors were trying to decide whether or not they were going to keep him until the feeding tube could be put in later in the week.  The GI doc told him he couldn't put the tube in because the damage to his throat was too severe and their method might cause more problems.  So the only way to do it would be through specialists in the radiology department.  This is the downside to not getting the tube in the beginning (like we were told) before the damage is done.  So many others have done the treatment without it, we thought he could too.  It was, in hindsight, a mistake.  Would have been better to have it and not used it than for him to go through what he did.  The other issue was the specialists only work on call and are difficult to get, especially on a weekend.  Long story for future campfires, but they found someone on Saturday afternoon and it was placed with no issue.  Ok, there was a little issue but thats LJ's story to tell on campfire night.  T'was quite the experience he tells me.

By Saturday evening they had him started on a special formula.  And finally he was able to come home on Monday, just in time to make his Monday radiation appointment.  Through it all, he only missed one treatment that will be made up at the end.  He's had the tube for over a week now and is doing so well with it.  He talks better, looks better, walks better.  He can drink water again and even take in some jello a little at a time.  That is 1000% better than he was prior to the tube.  It's not difficult to use at all.  It was placed in his stomach, so his shirt hides it.  I prepare the formula and help him with the feedings.  He also gets larger amounts of water through the tube.  It's amazing what a little nutrition and water will do for someone.  We went to his appointment yesterday, which was a week since being released from the hospital. He had gained 5 pounds!  His doctors were pleased.  He laughed saying he was hoping to lose another 15, damn tube hahahaha.  My LJ is back.

I on the other hand found myself sick while he was in the hospital.  I think the stress and lack of sleep had finally caught up with me.  I am not going to complain.  It's part of what you do when you love someone, but I did realize how important it is for me to have some down time, too.  Thankfully we have good friends in the Clarks.  Bruce takes him to radiation once or twice a week and they both make sure I am doing ok.  It's a blessing to have friends like that.

Sleeping during chemo

Something else we learned...a side effect of the chemo he is getting is "chemo rash".  It causes a red rash on your face and upper torso.  Prior to the feeding tube, his rash was pretty bad.  It doesn't itch but can be sore to the touch.  He is on a daily dose of antibiotics until he's done with chemo to help fight it.  Now that he has the tube, his rash is almost non existent.  Not sure what one has to do with the other, but it's another plus.

We just started his fifth week of treatment.  He has only 10 more radiation treatments and one more chemo treatment to go.  Then finally this part will be over.  It will still be about three months before he can get another PET and CAT scan to see if the treatment worked.  All we can do is wait and keep our fingers crossed.  Be glad when we have an answer.

These guys hang out by our window

Doing all this in the RV is tough.  I don't spend a lot of time outside like I would like to do.  Between taking care of his needs and household stuff the day just flies by.  He is up and down a lot at night, so sleeping isn't ideal.  But again, it is what it is.  Beats the alternative.  And I keep telling myself it's one day at a time.  And look!  We are almost done with round one of a three round fight.  We can do it.

So that's where we stand right now.  This obviously isn't the path we would have chosen.  We had soooo many plans for this winter.  But..there is always next year.  I just hope he gets though all this and comes out on the other side healthy and happy.  His goal is for us to make it to the reunion in June at Boomtown.  He says he can do it..I'm not so sure.  We shall see.  MY goal for HIM is to make it to his annual atv adventure in Utah this October.  He may not be able to ride, but he can at least enjoy time with friends.  If neither happens, that's ok too.  The future is still bright according to the docs and that's what we hang on to.  We will get back to this blog being a fun RV blog, documenting LJ's antics and our great life, I promise.

On our way to Taco Bell lol

Scooter is doing well.  He's adjusted to his dad being sick.  I try to get him out to play ball at least twice a week for his well being (and mine).  It's funny how animals instinctively know when something is amiss.  He's become quite cuddly.

As far as our new house, it still won't be ready until at least June, and most likely not until the end of July.  I really wish we were in it now because this would be so much easier to do, but it is what it is.  I am looking forward to not living in the trailer for awhile.  It will allow us to regroup, recoup and move forward more comfortably.  I'm looking forward to having a place for our daughter and family to come visit from England.  It's not so far that our son and family can't make it down.  And it gives us a home base so, for me, I can once again enjoy trips in the RV.  I guess I should call the blog our journey from sticks and bricks to Rv living and back again hahaha.  I know LJ would RV forever if he could.  I'll compromise and give him the summer.  It's too hot in AZ then anyway lol.

So, keep LJ in your thoughts and prayers.  We'll get back to the fun side of life soon.