#27 Slowly Moving Forward

Before I get into the LJ update, did I mention we have a new great grandson!?!  He just melts my heart.  Noah was born in January.  A bright spot in what has so far been a crappy year.  Our daughter and granddaughter keep us updated on Instagram, Facebook and Snapchat.  Thank goodness for modern technology.  He's all the way across the pond, so at least I feel like I see him every day.  Doesn't make up for the hugs and kisses but beats waiting for a picture in the mail lol.

Looks worse in person 😐

Now.. on to LJ.  What a difference two weeks makes.  Once his treatment ended, his side effects worsened for a bit.  But I was prepared.  The docs said it would get worse for a few days then turn the corner and get better.  One of the hardest things to deal with was his neck.  The skin on his neck and chest was just horrible.  The radiation causes several layers of it to die and that dead skin has to be removed.  He was in pain all the time.  I put different types of medication on the burns to help the dead skin soften for removal.  It wasn't pleasant for him, or for that matter, me.  I didn't choose to be a nurse for a reason, but I digress.   Slowly his new skin is becoming visible.  Now, two weeks later, there are only a couple of small spots that still need to be worked on.  His skin was bright red a few days ago and is now looking more like just a normal sunburn.  We have found the combination of creams that works for him.  It doesn't hurt any more to touch it.  I'm starting to see pieces of the old LJ again.  His fatigue is still there, but he's awake more hours and functioning normally..to a point.  He lost his goatee and that he isn't happy about.  I said at least that's all the hair he lost.  Could be worse!  He thinks he looks old, and he does.  But that, too, will improve as he improves.  He gets around much better.  He even takes the dog out once in awhile which is huge progress.  Showering on his own; dressing himself.  The change over actually the last five days is fantastic.

We went to see all different doctors over the last week.  His nephrologist is very pleased with his kidney function.  Sees no reason why he won't be fine after the right kidney is removed.  Has dropped him from a stage 4 to a stage 2, meaning the likelihood of needing dialysis is severely reduced and not something he is even thinking about now.  That was fantastic to hear.

His urologist, who will do the kidney surgery, didn't like how his throat was looking so decided to delay the surgery until June.  He wants him to heal so when they do the surgery they don't do further damage when they stick that tube down his throat.  I have some concerns over delaying it, but at the same time know it is for the best.  His surgeon said the likelihood of it spreading in a couple week delay is slim, but a chance we need to take.  If they try now, they could permanently damage his throat and vocal chords.  So, delay it is.

His chemo doctor was very encouraged by his progress.  She agreed with the surgeon about the delay for the same reasons.  He did break out in little spots all over.  She explained that is the chemo and radiation leaving his body.  So, another round of antibiotics.  Surprisingly after two days on the antibiotic the spots all but disappeared.  She will be the doc who orders his future scans and deals with anything cancer related.  I really like her.  She's a great doctor and you can tell she is a great person.  She truly cares about each patient...and their family.

His ENT doc, who originally found the cancer, saw him a few days ago.  As we are sitting in the little room waiting, LJ sees the scope on the counter.  He looks at me and says "he's (the doc) not shoving that thing down my throat".  So when the doctor scoped his throat (hahahaha) he told us the swelling inside was medium.  Doc thought LJ was doing very well.  He has seen much worse at this stage of the game.  He also said the tumor before was raised and now concaved which indicates the treatment was successful.  He, too, will keep seeing LJ off and on over the next year and beyond.  But we walked away with another doctor pleased with what they were seeing.

All the docs seem to talk to each other and will schedule their appointments so LJ isn't adversely impacted by the exams.  If one is going to scope and look...the other will rely on that doc so LJ doesn't have to have it done over and over.  What a great team.

Based on what I have seen over the last two weeks, it wouldn't surprise me if LJ is almost back to normal by June, just in time for his surgery.  That will make for a quicker and better recovery from that.  Attending the reunion in June is still up in the air.  He'd like to go, but there is still so much going on with his treatment and recovery.

He still has the feeding tube, but is starting to drink shakes, so that's good.  We will, every day, add things until he is eating normally again.  But I am still in charge of "feeding" him every three hours.  I'll be glad when that is over but, realistically, they won't remove the feeding tube until his first PET is clear..just in case, although he says he'll never do this again.  Can't say as I blame him, but we all know if he has to, he will.  He can have the tube and not use it.  I know he wants it gone, though, so we will work on getting rid of it.

look close..scooter in the shade

I can see light at the end of the tunnel...wayyyyy down there, but I see it.  There for a while, with all of his appointments and needing constant care, I felt I didn't have time to breath. But now, fortunately I have time to crochet and read, play iPad games since I can't be gone from the RV over a couple hours.  Scooter and I spend time at the house a couple days a week.  Scoot chases the ball and goes lizard hunting.  I just enjoy the peacefulness of the back yard.  David (our sales guy) has locked up the model so no more lookiloos.  I can sit there without random strangers coming in wondering why this weirdo is just sitting around like she lives there lol.  It gives me a break from all the stress of life at the moment.

I also, fortunately, have Bruce and Kath.  They make sure I get to go out to lunch or dinner once a week.  I don't cook so LJ doesn't have to smell it and get depressed.  But, one can only eat so much Taco Bel, lol.  And the two of them are always there if I need something.  Not sure I could have done this completely alone and am grateful to have them as friends.  I'm looking forward to living a normal life again and happy hour at the pool...one day their house.  One day ours, lol.

Kids wanted to come over from England this summer, but we all realize it will be easier on LJ and me if they wait. Plus, it will allow me time to buy furniture or we will all be sitting on crates and lawn chairs lol.

our slice of heaven

I was pondering moving into the new house, buying stuff...what I kept (not much) and what we need and it donned on me ...hmmmm... every time we have moved in or out of a home since we retired LJ has been unavailable, usually due to some pre planned atv trip.  This time it's cancer.
I mentioned that to him and he said "well... I didn't think atv trip would work again, so...".
If you can't laugh, why bother lol.  But that's my LJ.  He hasn't lost his wit or sarcasm.

He still has chemo brain, tho.  The other night Scooter was acting weird about 1 am.  So finally, through process of elimination, I figured he had to go poop. Side note.. Scoot only poops at the dog park because that's where he's supposed to go.  Far be it for him to go just anywhere!

So I tell LJ, who is awake now, that I'm taking Scoot to poop. Ok, he says.  I leave..come back..

LJ says "are you taking Scooter to poop?"  I just did. "You did?  Did he go?"  Yes. "Oh, ok."

Five minutes later.  "Babe, I think Scooter need to poop."  He shouldn't have to, I just took him.  Is he acting weird?  "No, he's sleeping."   Sigh......back to trying to sleep.

I swear..ten minutes passes and I am in wonderful dreamland.  I hear "babe?  babe?"  Am I dreaming?  Nope... It's LJ, So I say are you okay?  "Yea, I'm fine, but I can't sleep.  I was wondering if Scooter went poop today."   Yes, folks...that is my life.  Be it taking the dog poop, turning on a light, closing a window or changing the time on the microwave.. I shall answer the question at least three times before it sinks in.  Hopefully THAT side effect goes away soon. 😂

So for now it's same thing every day.  But we are getting there.  The support you all have given is so appreciated.  It means a lot and has been what helped get us through the worst part.  We still have a ways to go, but I think, the worst is behind us.  It's all downhill with a few bumps the rest of the way.

But, just to be on the safe side, please keep him in your prayers.

#26 Round one...done...on to the next

What a difference a few weeks makes.  LJ completed his chemo last week and his radiation yesterday.  Watching the deterioration is mind boggling.  Just seven weeks ago he was his usual strong self, a very young 70 year old.  Now at times it's like watching an old old man.  He shuffles around; sleeps 20 hours a day, waking to eat and use the bathroom.  Because of his extreme dry mouth (side effect of radiation) he can't talk well.  Plus his sore throat makes it hard to talk, so sadly we can't have conversations about anything.  He is a bit "foggy" at times.  Just a couple days ago he asked me what time it was.  I told him 10 am.  He was certain I was wrong and it was the following day at 10pm.  I told him to look out the window. It's daylight.  Took a minute for him to be convinced of the time. Not sure I ever convinced him what day it was.  That is chemo brain.  Per the doc all of these issues will lesson over the next few weeks.  But he also said his radiation burns and fatigue, along with the chemo brain will get worse over the next week as those leave his body, so be prepared.   But the good news is he is DONE with this first treatment.  Now we wait while he returns to his old self.  On the upside, his radiation doctor looks at the scans of the treatment every day.  He told us he thinks, based on what he sees, that this was successful.  Won't know for certain until the PET three months from now, but at least he is relatively comfortable telling us that.  Happy dance in my head.  I'll save the actual dancing for the PET results.

In the meantime, he still has to use the feeding tube because he still can't swallow anything but small amounts of water.  That, too, will get better over time.  Starting next week he will gradually increase what he takes in by mouth until he eventually eats normally.  Until then, the feeding tube stays.  He actually has maintained his weight since getting the tube.  The docs say that's a good thing and will speed up his healing.  We had a speech therapist come out to help with the swallowing issue.  He explained how the esophagus is flexible and with the swelling caused by the treatment, the opening is closed up.  As the swelling goes down, the tube opens up allowing more food/drink in.  It just simply takes time and only LJ will know what he can do.  He's determined to drink a big glass of tea and go have Chinese food with Bruce, so he's on a mission.  It will definitely be awhile but, as he mentally comes back, he will accomplish his goals.

Lots of Doctor appointments still in our future.  Round 2, the removal of the right kidney, is still scheduled for May.  We see the surgeon next week to confirm.  As bad as things are, they are good.  He, in many ways, is doing well.

Now on to funny stuff.  So this morning I get up at 6am, which if you know me is not normal.  I needed to get LJ fed and head to the dealer with my car.  I had an 8am appointment to get a rubber piece on the roof replaced.  Now LJ usually sleeps till seven, so this will be timed perfectly.  As I'm getting ready to go to the shower I see he is getting undressed.  "Watcha doin?" I ask.  "Taking a shower."  "NOW?  You can't wait till I get home?"  Nope.. gotta be now.  Ok.. he's going through a lot so I'll accommodate him.  30 Minutes later, with my help,  he is done...30 minutes...fiiiiiiine.  Not a problem.  I can still make it.  Gonna have to skip breakfast and combing my hair, but it's all good.

our teeny tiny 2nd bathroom 

Now he has to go to the bathroom.  Ok... you can do that on your own.  Go to the other bathroom cuz I really need to get in the shower.  As I'm exiting the shower I hear groaning.  He's sitting on the couch complaining the skin on his neck is hurting so I need to put the cream on it.  Can I dry off first????? geesh... Nope.  Hurry cuz it really hurts.  The cream does take away the pain and he does take priority, so cream applied.  I can air dry.

I hurry and get ready because I need to feed him before I go and now I am pushing it on time.  As I'm getting the food and syringes ready I hear..."oh...by the way...somehow the water got turned on in the shower (2nd bath) and it won't drain."  "How did that happen?" "I dunno, but you're gonna have to dump the black tank #2." R U Kidding Me!!  (If you don't RV,  Dumping a black (waste) tank requires pulling the dump handle, letting it run out,  turning on the super wash, filling it up, draining it again then adding water so you can add packets to help break down the waste.).  But ya gotta do what ya gotta do...so off I go outside.  I finish dumping the tank and come back in.  Shower isn't drained.  WTH...wait, awwww dang it.......because it drains into the GALLEY tank, which makes total sense, but, since we have never used that shower, who knew?  So, back outside I go to dump THAT tank.  This only takes a couple minutes.  BUT now I am 15 minutes from my appointment time.  Go back in and shower is drained.  Problem solved.  Clean up the mess later.  Now I feed him which fortunately only takes about five minutes,  so he will be good for about three hours.  Head out to the car...oh yea... Scooter would probably like to pee since it's been several hours and LJ won't be able to let him out.  So back to the trailer.

Finally on my way.  With all that, I got there only five minutes late (it's not that far).. no biggie.. and Five hours later I am done.  Five hours.  That meant LJ had to try to feed himself, through the tube because he can't go longer than four hours.  He said he managed but it wasn't easy.  That's an LJ story to tell.  You can imagine trying to put stuff in the syringe, open the cap on the feeding tube, pinch off the feeding tube until you can get the syringe in and pushing the plunger, pinching the tube, removing the syringe, putting on the cap...repeat..5 times.  It's a two person job, I admit, so I cleaned up the minor mess when I got home if that's a hint, lol.  The good thing that came out of this fun morning is we now know the small secondary shower goes into the galley tank AND most importantly we know he won't starve to death if something happens to me, lol.

A day in the life of a caregiver, lol.  I have a newfound respect for those folks.

A bright spot in our week was the gift of flowers from Mary Pat and Don Jones.  It was a lovely thing to do.  Brightened up the trailer, that's for sure.  Made LJ tear up a little.  He's been more emotional and appreciative of the texts and phone calls he has received.  It's nice to know people care.  Another bright spot for me was a lunch outing with the Clark's.  Only took us an hour to go to Spaghetti Factory 20 minutes away...on a Saturday...welcome to the Phoenix area, the land of constant road construction.  You'd think we lived in Montana or something, HA!  But a fun thing on that trip was seeing the old trailer park Bruce and Kath lived in many many many moons ago, back when he was stationed at Luke AFB.  Always a silver lining, lol.


I take back roads driving LJ to the doctor.  I pretty much stay off the I-10.  Surface streets are easy to get around on if you stay off the main one (McDowell).  I have noticed on our drive, up on a hill, what looks like an old resort.  No names, no signs, no idea what it is.  Bruce has researched it and can't find who owns the property or what it might be.  I happened to notice, between the buildings and Luke AFB, an entrance sign like you see on ranches.  Says Wigwam Resort and Golf Club...the current wigwam golf course is down the road quite a ways.  But..it gives us something to research.  I'd love to explore up there.  Looks like its been there a long time.  It's on my list of things to discover about our new home.


They finally sold out (save one) the development we are moving to.  Still won't be in the house till July.  Will take awhile to convert the office back to a garage and get the place ready for us.  We are okay with that.  Gives him more time to heal.  I still take Scooter over once a week or more to play.  He is obsessed with chasing the ball and looking for lizards.  Little munchkin has figured out how to catch the ball, then toss it toward the pool.  And of course he makes sure the ball goes into the pool.  He doesn't go after it though.  He lays down and looks at me with a "well...go get it" look.  Crazy damn dog.  Cracks me up.

Scooter, after five years, has discovered he likes to stick his head out of the window when the car is moving.  He likes the wind in his face, I guess.  Don't know why that is suddenly his "thing".  He barks for me to roll down the window, lol.  He is buckled in so he can't jump out.  He can only get his paws on the door and barely get his head out, so no need to worry.  He especially likes it when we see the cows down the road, hahaha.  Makes his barking more effective I guess.

I don't see any way for us to make the work reunion we have in June, but LJ says wait till the last minute because, like Thomas the Train, he thinks he can... he's a trooper, that one.  So, fingers crossed.

So, that's kinda where we are right now.  Thanks for keeping us in your thoughts and prayers.  Means a lot to both of us.  I'll update again when we know what's next.

#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.