#33 ...one more thing

Robust LJ (10/2018)

1979 is the year I met LJ.  I met him in February that year, as a matter of fact.  In February of this year (2019), 40 years later, he started his radiation/chemo.  We've been through a variety of things in our 40 years together, but I do believe this is the hardest.  It's been hard watching him go through all of this.  For a while there I wasn't sure he was going to be ok.  The radiation and chemo took such a toll on him.  For a couple of months he wasn't my LJ.  He was sick and frail.  I'm used to the big, strong, doesn't act/look his age LJ.  For a bit he looked weak and elderly.  But he is starting to be the Old LJ again.  His wit and humor is back.  His goatee is growing back.  He was 250 and could afford to lose a couple pounds when we found out about his cancer.  Now he's skinny, but really he isn't as skinny as when I met him.  He was 175 then and 190 now.  I think a good weight for him is about 200/210.  But until he can eat solid food again, he's going to be on the skinny side.  He's still a little weak, although that is getting better.  He gets very tired, very easy.  Just a short trip to the grocery store can make him tired.  He's getting frustrated with the recovery time, but I think we finally have some answers.

LJ Update:  LJ went and had the "barium swallow" esophagus test done that the new ENT had ordered.  The day after he did the test, the doctor personally called.  It appears LJ has an extreme narrowing of the esophagus where it meets his stomach.  Without a deep scope it is hard to tell what is causing the narrowing.  Is it scar tissue? Just narrow?  Since he is an ENT this problem is located below his area of expertise.  So he personally referred us to the premier Gastroenterologist in the area.  He called the Gastro doc personally and we got in to see him within a week.  Once again LJ has been blessed with a fabulous doctor.  This guy has all kinds of awards for best doctor.  He is very personable.  Like the ENT, he is in high demand and very busy.  But he does not rush you.  He explains things and answers your questions.  He takes the time you need.

He showed us the swallow test images and explained exactly what it going on with LJ.  There is definitely a restriction.  It could be scar tissue built up over the years due to acid reflux.  He was sure it wasn't radiation caused because the location is largely out of the radiation field.  The narrowing is why he hasn't been able to eat.  It's why food, even liquid, comes back up.  It's like filling a funnel with a tiny opening.  You have do it slow and a little at a time.

He told us the next step is to scope LJ's entire esophagus.  Usually you don't have to be put completely out, but in LJ's case, he is going to put him completely under for the test.  Depending on what he sees, although he is fairly confident it is scar tissue, he will then "stretch" the esophagus to break up that tissue.  He can only do a little at a time because too much and you can tear the esophagus and then you have real problems.  In many cases it take three or four procedures before the esophagus remains open, allowing food to pass normally.  He said in LJ's case it may take more.  He will have a better idea after the first scope.  Normally these procedures are done two weeks apart.  It stretches, goes back a little.  But before it goes back to the same position, you stretch it again.  You do this until the opening is what it should be.  This doc is an expert in this field, so we trust him to know what is best to get LJ over this hurdle.

After the first procedure (scheduled for 8/29) he will let LJ know if he should try moving up to solid but soft foods.  Until then, liquid food...by mouth.  I'll give LJ credit.  He listened to the doctor and has been taking all of his liquid food by drinking it.  He says his taste buds are still screwed up but things don't taste as bad as they did in the beginning.  So another step forward.

I still feel sorry for him, but at least we understand (or I should say I understand) why he hasn't progressed like he was supposed to.  On the other hand, nothing, apparently, is ever simple on this road to recovery.  He's still not out of the woods and still has a lot to face.  But if all goes as planned, for once, the real progression will start soon.  I swear with all that is going on and being done, LJ will be like a 20 year old when he's finished.

He is disappointed he isn't going on his annual ATV trip in October (insert eye roll here).  Up until yesterday he was pretty sure he was going to go.  But these procedures will take him into the fall so no trip.  Of course then we went to the grocery store and I think the reality of his stamina (he has none) set in.  Shoot for your annual February trip I told him.  I think that is doable.  He should have his thyroid out and the esophagus fixed, along with no feeding tube by then.  In the meantime he can build up his stamina by walking around the house and yard.  Speaking of which...


House Update:  FINALLY.... we did the "fix this" walk through yesterday.  They were quite accommodating about repairing and repainting a lot of the walls.  Since it was a model, there were some minor wall repair issues.  Why the decorators have to hang every flipping picture with a molly bolt is a mystery.  Since we bought the house fully decorated and furnished they didn't have to do anything about the walls.  But they were pretty good.  I told them what would be coming down from the walls, so they fixed them.  I was reasonable, though, and didn't ask for too much.  The garage conversion is 90% done.  They still need to trim the trees so we can get the RV under them.  A few little things here and there.  We sign on Friday and close in 6 days.  It's finally here.

Scooter will finally have his home and his back yard.

I will finally have a pool and a place to craft, along with a real refrigerator and stove, lol.  Yea yea.. I know...I don't cook.  Says so on the sign I have in storage, lol.  But I am sooooooooo tired of eating at restaurants.  I am honestly looking forward to cooking again.  And I think some of the cooking shows LJ watches constantly have given me a desire to experiment.  I now have a great kitchen for doing that, so why not?!  Plus, it means I can go shopping for gadgets and what nots.  Annnnnnd I really need to lose this weight.  I'll be able to swim and eat right.  I know.  You can eat right going to restaurants.  No you can't.  They have stuff there.  Good stuff.  It's just too hard.  But I get through it by still sending LJ pictures of my food.  Now I'll just fix it and he'll have to look at it and smell it.

LJ...well...nothing really changes for him.  Comfy chair and a tv...he's good.  He'll just have a better recliner and a bigger tv hahaha.  He did say it isn't fair that after 40 years I have decided to start cooking and he can't eat.  Then he thought about it and said, well maybe that's a good thing until you practice for awhile.  😜

Oh.. and a realllllllll toilet and shower. Not that the RV doesn't have those.  But....if you own an RV and spend any amount of time in it, you totally get my excitement.  Two and a half years... Who knew a toilet and a shower would make someone so happy.

I am stressing trying to figure out how to get our stuff here from Reno, but, oh well.  Not like I really need any of it.  LJ won't let me do it without him so we will wait..........I'll figure it out.  Friends have offered but LJ is stubborn.  He feels guilty so we will get it when we get it.

It's still a little bittersweet.  And I won't lie.  I have had mixed feelings as it gets closer.  A part of me doesn't want to give up the freedom of the RV life...but with all that's going on, it's the right thing to do.  Once he's better we can take off whenever we want, for as long as we want.  But there will be home to come back to.  A home where the kids and grandkids can come visit and we can live normally.  I'll enjoy leaving and coming back.  400sf can get a bit cramped unless you are moving around the country.  And since we don't move around much in the winter...I'm good with spending that 5-6 months in 3200 sf with all the amenities 😃.

Scooter Update:  Poor little guy has been under the weather a bit.  He had a sore ear for a couple weeks.  Fortunately it wasn't bad.  No real "matter" in his ears, just a bit inflamed.  He's not a fan of the vet as you can see by his woe is me look while waiting.  He won't even look at me, lol.  But he's real good about letting them examine him and letting me put the drops in his ears.  Vet said it's pretty common and she is surprised in his seven years, this is his first earache.  She said we are pretty lucky he isn't prone to get them.  She also told me he might get them if he goes swimming, so to be sure to use drops to dry his ears afterward.  I am going to do some research for over the counter stuff before I pay for a prescription.  But, if he likes to go swimming, then whatever he needs he will get.  Speaking of swimming...

This is the little rat dog after he decided to fall into the pool chasing after his dad while dad was cleaning the filter.  (no we don't live there yet, but we pretend we do hahahaha). Scooter was trying to bite the filter basket and missed a step.  Splash... He can swim, we have learned.  Rather than immediately pick him up, LJ guided him to the big step so he could get out on his own.  I need to figure out what to put on the inside of the pool, just under the deck, for a beacon.  I realized from his vantage point the side of the pool looks the same all the way around.  But I want him to be able to find the step to get out if he falls in.  This is why he NEVER goes outside alone.  Well, that and coyotes and owls and ravens....  He does have a life jacket that we will put on him during swim time.  That way he can also build up his stamina and learn where to go without stress.  Just like us, he has been fairly sedentary over the last few months.  He needs to get back in shape too.  I think daily ball fetching and swimming will help him.  It'll ease his boredom, too.  There's nothing more pathetic than the sound of a dog, deep sighing, because he's bored.  Probably why when I take him somewhere he barks...kinda like a kid saying "are we there yet?"


He loves to lizard hunt and chase off the birds.  As you can see by the picture on the right, he also keeps an eye out for both when he is inside.  I think he thinks it's his job.  When not staring out this window, he goes to the big sliding glass door so he can see more.  It's the way he was when we used to have rabbits.  Watch for them, whine to get out, turn circles until you open the door and then chase them off.  He is going to be a happy little fella in one more week.

Now something our house has that I'm not sure we need is an outdoor fireplace in the courtyard.  It really is cool.  It has a switch to turn it on for convenience.  I'm pretty sure it won't be used in the summer.  But...in the winter and late fall, it can get a little chilly at night.  That's when sitting out there will be relaxing.  I do plan on buying an outdoor set with a fire pit table for the Cabana out back, but in the meantime, I can sit under the stars with my little fireplace going in the Courtyard out front.  It's a private courtyard, especially once we get the gate installed.  I never would have bought it, but hey, it's the model, so it came with the house lol.

We have been very lucky.  We are in the middle of monsoon season and I have been dreading it while in the RV.  50-60 mph winds with rain in an RV...nope.  But this year, so far, we have only had one real windy day and one hard rain night.  Don't know why.  Usually there have been several by now.  I will say that the East and South side of Phoenix has been hit pretty hard with the weather.  Even north and to the west of us have had some.  But for some reason it has skipped over us.  I think the weather gods know LJ and I have really been through enough, so they are sparing us...for now.  I see thunder clouds almost every day, along with some pretty dark skies...in the distance.  So for now...thank you Mother Nature.  You're kindness is appreciated.

So that's it for now.  Hopefully next week goes well.  House keys on Tuesday...esophagus stretching on Thursday.  Doctor followup visits the following week.  I'll post again in a couple of weeks.  Let you know if we survived.  Until then, thanks for reading and all your prayers.  Without them, I don't know if we'd be doing as well as we are.  💖

#32 baby steps

Well here we are, another month down.  I was reflecting the other day about our grand plan to travel and how that didn't work out for us.  I was sad and feeling a little regret.  But then I came across the above picture and it just spoke volumes to me.  Ok.. so we didn't get to travel in the RV like we planned.  It's not like we haven't travelled the heck out of this country on the Harley's and some in the RV.  Life dealt us a whammy.  But LJ is getting better...and life is good.  So while this isn't the life we planned, it's what we have and by golly it's better than what a lot of people are living.  So I am choosing to find the joy in our life story and see where it goes.  Now for the updates...

LJ:

It's been a busy month of doctor visits.

LJ had a PET scan done in early July.  We were given a copy of the results and it's all in Doctor speak sooooooo....  But from what we have been told, there is nothing too concerning.  A PET scan lights up when there are infected cells, including cancer cells.  There is still some "lighting" on the various parts but a lot less than before, so they tell us that is what they wanted to see.  Ok... I was hoping for NO lighting, but what do I know.  All the docs said the scan was done a little early so not to be concerned.  Ok... you're the docs and you obviously don't know me.

We saw an ENT who is one of five throat surgeons in the state.  He is the go to guy for difficult throat and tongue surgeries.  We were sent to him for a second opinion and to establish LJ as a patient just in case surgery is needed.  He is absolutely wonderful.  He takes the time to explain what he sees and answer all your questions.  I'm beginning to think the docs in Arizona are trained that way, lol.  He explained the first visit with him gives him a visual baseline.  He can read the reports, but this is the first time he has seen LJ.  He wants to see him again in a month to see what changes are present.  He did scope LJ and saw nothing too concerning.  He gave LJ three mouthwashes to use over the next two weeks...one for thrush...one for the reddening in his mouth and one for dry mouth.  It's been five days and they seem to be working.  LJ already says his mouth and throat feel better.  He also explained that any inflammation in LJ's throat or mouth can cause "lighting up" of the area.  So that's why they like what they see in the PET but still can't clear LJ.

The ENT specialist also told us the tumor is still on the thyroid.  Radiation rarely does any good there.  He most likely will have to remove the half with the tumor, but can leave the other half in place so there is still some thyroid function.  That was new.  I thought they had to take the whole thing.  He also told LJ that if his swallowing doesn't improve because his esophagus is too narrow, there is a surgery for that.  Unfortunately it has to be done more than once.  The esophagus is stretched open.  It lasts for a while, but then goes back, so if they do it a few times it seems to permanently open up.  He will send LJ in for an esophagus check before that decision is made.  Could be his is narrowed because of the radiation and simply needs to heal.  The good thing is he can do the initial stretch the same time he removes the thyroid.

Recently we saw the radiation doctor for a followup.  He told us there is a small mass on his upper lung that showed up on the scan.  It is a very strong possibility this is just a side effect of radiation.  That will be monitored to see if it clears up.   Again, not too concerned.  SO, if they aren't worried...we aren't either.  or so we say.

We saw his kidney doc who was pleased with the function of the left kidney, under the circumstances.  Both the urologist and nephrologist agree not to do anything to the tumors on the left kidney since the right kidney was benign.  High percentage that the left tumors are also benign.  They will do a scan every so often to determine the growth of the tumors.  If the growth is negligible, they will do nothing.  If they start to grow, they will treat them.  So another wait and see.  The kidney function number does put him in a stage 3 kidney disease category but on the low end.  He won't have any diet restrictions other than lay off the salt and drink water.  No physical restrictions either.  But he needs to pay attention to the salt and water.  That will be necessary to keep him from advancing to stage 4 or 5 and the need for dialysis.  We are still early in the recovery so his kidney function can improve and possibly put him at stage 2 which would be awesome.

Lastly, the oncologist sent LJ to a geneticist to see if it can be determined why his body makes tumors.  He went for his consultation and they have done a blood test so...yep...we wait.

The good news is..well I guess it really is all good so far...anyway.. the ENT told LJ to fight through the pain and drink his meals.  Since LJ and I always have different opinions on that, I asked the doctor to repeat it...basically so LJ knew I was right.  So in a nutshell...drink your food (like I said all along).  I will admit LJ did come home and drink a shake for one of his meals.  He told me it didn't taste AS bad as it did in the past and didn't burn like it used to so that's progress.  He has a plan on how to replace all his meals with drinking and eliminate the tube feeding but won't share it with me lol.  He knows that when he says it, it is set in stone.  So I guess it's a secret lol.  But at least we are making those baby steps.  If he truly gives it his all, I think he can be done with tube feeding by the end of the month.  So far he has done it once or twice a day.  But in the meantime........we wait lol.

LJ in February

LJ in July

When LJ started this journey, he weighed 250.  He now weighs 195 and that's actually a good weight for him.  He feels better and likes where he is at.  His goal is to keep his weight in that 190-200 range.  I think he can do it.  The pics don't really do justice to the change.  His shirt sticks out in the July one because of the feed tube.  He's definitely skinnier...but a healthy skinnier.  Unlike me.  I'm pretty sure I've gained every pound he has lost, dammit.



THE HOUSE:

Been sooooooooo frustrated we aren't in the house yet.  But they did FINALLY give us move in dates.  We do the initial walk thru 8/20, sign the papers 8/23 and the final walk thru and keys on 8/27.  Nothing like cutting it close, Meritage Homes.  We had no place to stay starting 9/1 lol.  All the local RV parks were full for the Labor Day weekend!  Geesh.  I'll be getting those darn keys on the 27th or I'm standing on somebody's' desk.  The true frustration is knowing we signed the purchase in February...gave them until June to use it as a model and it has just sat there ever since.  We could have been in it by now.  I told our sales guy (and now friend) David we would be staying with him if it's not done, lol.   I did drive by yesterday (July31) and they have actually started the work.  Sigh.... breath...  Put more money in the bank and quit bitchin'.  If you know me then.................


The Gr Grand BB, Noah

I'm dying to go see this little guy.  Thank goodness for social media.  I can watch him grow from afar.  He makes me laugh.  He can feed himself the bottle.  He actually isn't too bad with a spoon.  He's crawling, standing and ignoring his mom when she calls him like all little independent kids do, lol.  He does smile and laugh all the time.  He likes to please, I think.  Once LJ can totally take care of himself, I am off to England.  Want to see him before he starts school, for heaven's sake.  Until LJ is off the tube, he can't travel because we can't take his food.  So I get by with FaceTime and pictures.  But I really want to hug him.  He just turned 6 months July 24th.  Time is flying by.




ARIZONA

This is a cactus flipping mother nature off.  I'm sure of it.  Actually, I have been surprised how tolerable the heat is.  It honestly isn't that bad.  You do plan your days differently.  Do stuff early and get home.  The RV has been able to keep up with the 115 degree days so we are all good.  I have been over at the house a couple of 110 degree afternoons and am shocked at how tolerable it is in the shade.  The cabana has ceiling fans and it's quite comfortable sitting there.  Plus the house faces West so the backyard is in the east and is in the shade in the afternoon.  The pool is nice.  Be glad when I can get in it without fear of the neighbors calling the police because some whale broke into the pool next door trying to beat the heat lol.  I really need to start that diet just as sooooooon as we move in.  Haboobs are weird.  You see the warnings.  You know they are coming.  But when they hit it's just a bit windy with some dust.  No worse than windy days in the Nevada desert.  You still don't want to be outside, though.

pretty...wish I had taken it

We have had the pleasure of riding out a monsoon in the RV.  Thaaaaaaaat's fun.  Kinda like an E-ticket ride, lol.  Lots of shaking and rolling and not for a good reason.  But all in all it wasn't that bad and really was interesting.  The lightening shows are incredible. There's more due throughout August.  Wow...something exciting to look forward to!  Scooter doesn't like it.  He becomes quite the cuddle bug for the first half hour or so...then he's like "ok...no big deal.  I'm going to bed, but I'm not peeing outside.  I'll hold it.  Wind messes up my hair."   such a diva...

playing ball at the park

Speaking of SCOOTER

I can tell he's bored, but it's just too hot to go play.  I have taken him to the park by the house early in the morning so he can play ball.  But even then it's just too warm to do it for very long.  I bought him a life jacket for the pool so he can go swimming with me.  Looking forward to that.

He is quite the character, though.  He has decided the best way to wake me up in the mornings is not with little kisses...like he used to.  Not with a soft whine...like he used to.  But by jumping on me and pushing me with his front paws with all his might.  Then he stands on me and wags his tail.  Got to admit, it's pretty funny.  He's pretty proud of himself, too.

AZ Roadrunner

So... that's about it.  Just kinda rolling along.  Nothing really humorous to report, although I did let LJ drive up to Harbor Freight the other day with me as a passenger.  Scared the living crap out of me.  So I got in the driver's seat while he was inside.  He couldn't figure out why.  I just said...hey it's easier for you if I drive.  We won't die that way.  I guess that's what happens when you don't let someone drive for awhile, lol.  You forget how much they scared the crap out of you back then.  Not that he isn't an excellent driver, cuz he is.  Years of EVOC training and years of driving.  I just like to be in control...yea that's it.  Even if I do drive like an old lady now.  till next time......