#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.