#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......