Weekly Update on MyHero--It's getting better folks!!!!

For those of you that don't follow us on

The Caring Bridge

this is what is posted there today.

Good Morning- This is a picture of John with two of his favorite little people in the world, Alana & Julia.  Sister Maria was at a wedding so the girls were here to get dressed for the reception. The lighting was poor so the picture quality is not great but we are so happy that the girls were able to visit and see Papa for a couple of hours.  As you can see, John is much thinner.  He is 60 pounds lighter than he was last Fall. While I would like to lose some weight I DO NOT want to follow his diet plan!  You don't either- trust me!!!!

I, for one, am glad to see this month come to an end.  It has been a long, hard month. There were days when we counted down the hours from rising in the morning until day's end so that sleep could claim us for a few hours of escape. However, as the month has progressed there has been improvement.  It is slow to come and is measured in weeks rather than days at this point. Living with it day by day, it is not easy to see the sometimes minuscule improvements as they happen---but looking back over the week at its end we can see progress.  Slow and sure is the motto that we have adopted.
 
John is 'brighter' than he was at the beginning of March.  He is tracking better and is able to stay awake for longer periods of time.  While still unable to eat, he is beginning to be able to swallow again.  He has tried a few 'tastes' of things but either can't get them down or if he can get a little bit down the taste is 'off'. His pain level remains manageable and he is weaning off the fentanyl patch.  He has not had any morphine in about two weeks.
  
We are looking forward to continuing improvement in the upcoming month of April. He has set a goal to go back to work as a chaplain the first week in May.  We are praying that happens and he is working towards that goal.  He will still be on a feeding tube but will be able to manage that himself at work.

The next journal entry will be from him.  He has improved to the point where he can focus enough to communicate more effectively.  Three weeks ago, he could not concentrate enough to even read properly.  He would doze off, or worse, read without full comprehension of what he was reading.  Today, he is reading his Bible and his inspirational books and watching something besides GOLF on TV.  (I really thank the Lord for THAT- I am ashamed to say that I often hoped the GOLF CHANNEL would be taken off the air-sorry Jerry Price!)

As always, we thank you for your prayers and well-wishes.  This has been quite a journey and we appreciate that you have walked this rocky road with us-helping us over the rickety bridges and road that is filled with unknown obstacles.  With your help, and prayers, we have been able to conquer so many of those challenges.

Love you all- and thanks for sticking with us..and for your continuing prayers. Diana

Update on MyHero and Dr. Bob Wagner & A Prayer Request for Ron Tomes

First of all-

thanks to all of you for all your prayers

and comments about the loss of our friend, Jeff.

John was very comforted by the response.

While there was some sadness this week,

there is also some very good news.

Our friend, Dr. Bob Wagner,

Robert H. Wagner Family Dentistry

came through his surgery with flying colors.

He went home last weekend and is recovering.

I know Bob's recovery is not an easy one

but I also know that Bob 

will tough his way through it

and be completely healed.

For those of you that aren't able to access

The Caring Bridge

here is the update on there about MyHero.

For those that have inquired what his treatments

were like--

this is what a session in the 

radiation room looked like.

(faint of heart need not look at this)

Cancer, at the end of the day,

 is a cold, lonely business.

For head/neck cancer there is 

a mask across your face and chest

that holds you in place for 'zapping'.

Below is my post to 

The Caring Bridge

What a week!  As you can see by the picture this is what March 24th looks like at the playhouse and, at 7pm,  it is still snowing.  It appears we have about 15" of snow out here by the bay.  This is NOT what Spring is supposed to look like-that is what Christmas is supposed to look like.

This has been another hard week for John.  We got the very sad news that one of his best friends had passed away unexpectedly.  He found out on the 8th that he had cancer and, without a whisper of pain, he passed away on the 18th.  While we are grateful he passed peacefully, without pain or complications, we are sad to think that he is gone from this Earth.  His death leaves a hole in John's life that will never be filled.
John continues to not feel well.  He is still fighting nausea and not sleeping well.  He is still unable to swallow so wakes up every hour or so to clear his throat.  We know this is temporary but, even so, it is uncomfortable and hard to deal with on a daily basis.
However, from the outside looking in, I can see improvement.  John's neck is healing nicely and is no longer as angry looking as it was.  It appears his weight has stabilized and his overall color is better.
Our daughter and her sweet friend gifted John with  the little Roku 'appliance' this week.  He now has access to all sorts of free movies and TV shows- old and new.  Unfortunately, thanks to one of the guys I work with, I discovered a series I like so I have been 'stealing' the ROKU remote and, as soon as John 'drops off' watching a show, I change the channel.   shhhhh....Sometimes I manage to switch it back just as he is waking up....I am SNEAKY GOOD like that.
We have HOPE!  HOPE that each day brings a little more improvement--HOPE that there is a full cure in John's future--HOPE that he will be able to return to work in May.  That is the goal he has set for himself.  I do believe that John, being the determined soul he is, will go back to work in May!  Meanwhile, we will just keep plugging along, doing what we have to do, and praying for a fast healing.
Thank you for popping in here.  No need to leave a note if you don't have the time- we understand.

I know it is the 24th of March but 

this is what we woke to this morning.

It has snowed all day and I believe we have

well over a foot of snow.

As I write this, it is still snowing.

AND, finally,

Please pray for our friend of many years,

Ron Tomes/The Caring Bridge.

He is having a stem cell transplant.

His son, Brian, is his donor and,

although not a PERFECT match,

he is well-matched.

It is funny (well not ha-ha funny)

to see Ron bald.  

He has always had a beautiful

head of silvery-white hair.

We are praying for the best for Ron.

This has been a very long process

for him and his family---

and he will have several months of recovery

away from home.

Pray for his wife, Sue, and their family, too please.

If you are not inclined to pray,

please send them all good wishes and 

 healing thoughts.

As for me--well, I am hanging in there.

I will be watching out the window for 

THE EASTER BUNNY

and hope that he brings John a

MAGIC HEALING EGG.

My friend, Margaret told me the other day 

that her mom always said,

"Miracles happen at Easter"

That's what I'm hoping for.

You can have MY share of chocolate

and jelly beans and we'll take the

miracle of  healing.

Hmmm...yes you can have my chocolate and 

my jelly beans

BUT you CAN'T have MY PEEPS!

Unless you care to join me for breakfast.

image

RIP MISTAH. JEFF! We will miss you!

Our friend, Jeff, passed away.

What a blow for MyHero

as he is recovering.

When MyHero and I were dating

he had two best friends.

One was his roommate, Greg.

His other best friend was Jeff.

Jeff and John went through lots of ups and downs

in their early adulthood.

They commiserated with each other

during those hard times

and, in so doing, became

BEST FRIENDS.

When we got married we moved to

Wisconsin, MyHero's home state.

Jeff, being a Southern boy, stayed

DOWN SAWTH!

We saw him sporadically over the years,

when we traveled back to the south,

or when he came to visit us.

We visited them at their beautiful estate here.

Not sure WHY these two boys are so serious-

they were usually yukking it up about something.

We were delighted when he met and married, Miz' Barb,

(this picture does not do her justice-

she is just a beautiful OUTSIDE as she is INSIDE).

She's a wonderful woman who made a better man

out of an already good guy.

John called Jeff a couple of months ago

to tell him he had cancer.

When they hung up, John told Jeff he loved him.

That would be the first and last time

that he ever said that to him.

On about the 8th of March,

Jeff was not feeling well and went to the ER.

Long story short-

Jeff was full of cancer-

too late to do anything about it.

Ten days later, on March 18th,

he passed away.

No pain-No meds-Talking right up to to end-

He just stretched out in bed and went to sleep.

Miz' Barb is heartbroken.

They were connected and always together.

We so wish we could be there with her 

to offer support and love.

We will visit her later this summer

when MyHero has recovered

and see the spot where Jeff is buried.

It is hard to believe he is gone.

He was one of those funny guys with a dry sense of humor

that enjoyed a good joke.

Being a 70s sort of guy,

he used to refer to people as 

TURKEYS...

as in--

"That guy's a real turkey" 

OR

'That TURKEY doesn't know WHAT he's doin'".

That made it especially funny when he 

bought a mountaintop retreat-

AND

when we went there we found him...

you guessed it...

he was feeding REAL turkeys.

Rest In Peace, Jeff.

We will miss you, old buddy!

See you on the other side.

Hope they have some turkeys over there for you!

Edited to add:
Just remembered- we have another
TURKEY CONNECTION
with Jeff.
I sent them my 
TURKEY OIL PAINTING
after they were here and admired it.
(proving that God has a sense of humor
in providing me with a turkey painting to give him)

I will have an update on Friday
about MyHero and 
Bob Wagner, our dentist.
Thank you for your continuing prayers.

UPDATES-UPDATES-UPDATES & Belated Happy St. Patrick's Day Pictures

Let me start on a happy note!

I am pretty much home-bound

when we are not at the cancer center.

John really can't stay alone at this point.

That has given me time to do some sorting projects

and also do some SEWING!  Yay!

Having Irish in my DNA means

that I believe in Leprechauns and all the 

hoopla that goes with St. Paddy's Day.

I don't want my kiddo's to get 

PINCHED FOR NOT WEARING GREEN

on St. Patrick's Day.

You DO KNOW about that tradition, don't you?

So--

I made Big Boy E, CharlesInCharge, CJK,

(and CJK's friend, BOB) vests and ties.

I made sweet little BRIGHT EYES a dress

with matching pantaloons and a dress for her baby doll.

Poor BigBoyE had an earache so didn't have much fun at all.

This was a fun project and I made everything in a day's time.

Those represent some of the joys in life

(except for little E's earache).

There are also some not so good times.

A couple of times I asked for prayer for my friend, Laura,

HERE as she fought an aggressive form of cancer.

Earlier this week, 

Laura crossed The Great Divide.

I choose to believe she is in Heaven 

with those that have passed before her.

She was in SO MUCH PAIN and was SO SICK

that I think it is a blessing that God took her home.

Her hubby is going to be lost without her.

He was her primary caretaker and she was his life.

Please pray for him and their adult children.

I am waiting for a full update on Dr. Bob Wagner

but my understanding is that he came through surgery just fine.

I can give you more information after I talk to his wife.

There is an update today on

The Caring Bridge about John.

For those that don't visit there here is a copy

of that update.

Well, I wish I could tell you that John is doing really well and

 that he is recovering quickly----but that wouldn't be the truth.

The truth is that the recovery is as bad as the treatment-

maybe worse in a way.  Once treatment is finished you kind 

of feel like you have crossed that rickety bridge and should 

be  'home free'.  The reality is that you are a long way from 

home and the road to get there is full of potholes and hidden

 dangers.

This morning while I was packing our stuff up to spend a

 couple of hours at the cancer center for hydration, John

 passed out.  He 'thinks' he passed out three times in the

 bathroom.  He remembers sinking slowly and I am not sure

 if he hit his head on the wall or the counter but he has a

 large patch of missing skin on his head. 

I walked into the bedroom to remind him that we needed to

 go to find him sitting on the bed with a bloodied head and

 shaky. I am good in situations like this but it took me by total

 surprise.  When I told my son, Ryan, (he of the wacky humor) he said,

 "I hope you yelled at him and told him to clean up the blood off the wall."  

As you can see, I get a lot of sympathetic support from him.

 While John does not need stitches the wound is more than a surface scratch and, when we got to the cancer center, they bandaged it so that it does not get infected.They ran some blood work, while we waited for the hydration to be finished; to make sure his numbers are okay.  Everything is within 'normal range' for someone with cancer so is able to be at home.They assured me this is quite common with patients and that we should not be overly concerned.  

That, at least, is reassuring. 

We are looking forward to continued improvement by the end of next week.  These last two weeks have been hard; hard to endure and hard to watch.  I don't like that feeling of being 'helpless' to do anything to improve things for John but that is what it is and I just do the best I can at any given moment---even if it means biting my tongue sometimes...and y'all know how good I am at THAT! (not)...lol

On a bright note- In the picture above you will see that I made vests for three of my little grandsons, Ethan, Charlie & Carlisle  and a dress for Anna Ireland.  I made a matching dress for Anna's doll and a matching vest for Carlisle's 'little buddy', BOB!  Poor Ethan had an earache and didn't enjoy the day - but you can see in the collage that the other kids all wore their outfits for the day. Noone is gonna pinch my little Irishkins on my watch!

Have a great weekend and watch for Leprechauns.  They don't really leave after St. Patrick's Day, you know.  They are in our house year round. We are hunkered in to watch some movies and mindless TV. ONE of us might doze off a bit here and there (and it is not me).  

 I want to thank you for all your prayers 

and the kindness you have shown us.

Many of you have sent cards and letters

and I apologize for not always sending you a personal

Thank You!

Just know that we read them all and John has them

by his chair and goes through them every few days.

He is still in disbelief that 

"that Nana Blog thing" 

would create friendships where people 

REALLY CARE 

about someone they have never met.

I just kind of throw his preacher stuff back at him...

Oh, Ye of little faith.

Cuz that's just the way I am!!

Have a wonderful, blessed weekend!

PLEASE PRAY FOR OUR DENTIST-The one that discovered John's cancer

Our dentist,

BOB WAGNER

is the one that discovered John's tumor.

Had Bob not called the house to follow up,

John would not have sought treatment

until it was too late to be curable.

We owe Bob a big debt of gratitude.

Yeah- I know he's not much to look at-bwhahahaha-

The disgusting thing is we have all aged and he has 

looked the same for about a hundred years.

Sadly, his wife has not aged either....

must be all that laughing gas they inhale after

office hours?

He is not only our dentist- he is our friend.

Our friendship dates back many years.

We have laughed and cried and 

prayed together over the years.

Bob is one of the most caring,

concerned people we know-

always there with a prayer 

for someone.

Now he needs prayers because

he is having some 

serious surgery tomorrow.

He went in for a calcium scoring-

a routine test to check for plaque 

in the veins and arteries.

Thank goodness he went because 

they discovered an aortic aneurysm.

He will have several weeks of recovery

after surgery.

That will probably be the hardest

part for Bob because he is not

prone to 'sitting'.

I was lucky enough 

to get in for a filling

earlier today.

Whew!

I'd hate having to look into a new face

while someone was 

drilling holes in my head teeth
plus no one can expound on 
politics quite like Bob
when you are a captive audience
and can't say a word.

Please pray for a successful surgery,
the hands of the surgeons and medical staff,

an uncomplicated recovery,

and a return to perfect health.

Also, pray for his wife and family

to have peace of mind and know

that Bob is in good hands-

on Earth and in Heaven.

If you are not inclined to pray,

please send him and his family

your best wishes.

Thanks so much.

I will have an update on MyHero

in a day or so.

HAPPY BIRTHDAY DIRTY GIRL---BEFORE AND AFTER!! Here's MUD in your eye!

I haven't been posting much

since MyHero was stricken with cancer.

However,

I HAVE TO SHARE THIS.

Remember the times you got your kids

all dressed up cute for a special occasion?

AND then let them play for just a few minutes!

So cute as she examines her well-used mower

in her special little smocked dress.

AND THEN

YOU RAN TO THE BATHROOM!

When you came out of the bathroom

THIS was standing against the garage door....

And once inside

it looked like 

THIS!

Happy Birthday,

Dirty Girl!

Your Nana loves you to the moon and back!

End of the first POST-TREATMENT WEEK & Happy Birthday Bright Eyes!!!!

I know not all of you follow me on

FB or are able to access

The Caring Bridge.

so I am going to copy and paste 

my journal entry here

for those of you 

that don't have access to that site.

Happy Friday!
John had a very long week.  His throat is raw inside and out and he feels miserable overall.

We had our final 'follow-up' visit with Dr. Kevin Mortara, the oncologist this morning.  Let me say here that he is a high-quality person.  An intelligent caring man that is encouraging while still bringing reality to the table  We like him for his optimism, but also for his honesty.  He did not say- You are going to be great in a couple of weeks.  He did tell John that he believes this is the "low point" post-treatment. 
 
John has a long, hard battle ahead of him.  While the treatments have ended, now comes the reality of recovery.  Dr. Mortara says 6 - 8 weeks--more like 12 weeks.  We were told that John has done exceptionally well during his treatment.  He followed directions just as they were given and, as a result, it appears that treatment has been successful.  We will know more in early June when they do a final PET scan.  Although John still has a couple of nodules on his lungs they do not feel they are anything to be concerned about at this point.  If they are---well, we will cross THAT bridge when we come to it.  At this point, we are believing there is not another bridge to cross....except the one to good health.

John does fight taking "drugs".  He is so opposed to taking anything that is opiate based that it was hard to get him to accept the fact that morphine might offer him the only relief possible.  Nothing else has worked.  When his pain level reached a 5 (on a scale of 1 to 10) he finally allowed me to administer morphine.  The results were almost immediate and he slept for 5+ hours.  It was the longest uninterrupted sleep he has had since this started last fall. I closed my eyes and thanked the DRUG PUSHERS (known as doctor and pharmacist) that enabled John to find relief-even for a finite amount of time.

We are continuing to go into the cancer center for hydration 2 or 3 times a week.  This will most likely continue for a while.  John has not been able to swallow and I can only put so much water into his feeding tube before he feels bloated and miserable.  IV hydration is the answer for him.  It is about a two hour session in a big comfortable chair with warm blankets and a bright window. 

See this cute little Irish colleen?

The bright spot today is that our little Anna Ireland is TWO YEARS OLD TODAY
Her mom put a sweet little birthday dress on her and she went out to mow the lawn.  That's my girl!  
What a blessing she is in our lives---as are all our grandkids.

I hope you all have a beautiful wonderful weekend. 
 
I will leave you with the last words Dr. Mortara said to us today---"I would encourage you to live each day to the fullest.  Look at each day as if it is the only day you might have because life is uncertain, and you never know what tomorrow might bring." 

 
That is one smart man!

AND THAT is my new mantra!

Blessings and love to you all- Diana

An Update On MyHero. His Last Radiation Treatment has been completed.

This is a copy and paste from The Caring Bridge.

I am posting it here for those of you that 

aren't able to access the Caring Bridge.

This has been a very rough few days for John.   

I think that he thought once the last radiation treatment was over that he would feel better.  The truth is he feels worse at this point.
      
Coming out of the last radiation treatment, his neck was openly bleeding.  We had seen bits of blood in the past but this was much more pronounced.   
It was like something 'broke loose' at this last session and the secretions he has been experiencing seemed to double. He is also coughing up a bit of blood from the trauma to his throat.  You can imagine how miserable that is with not being able to swallow.  He has also been very nauseous for the last several days.
     
Dr. Pan, the radiologist,  insisted that he have 2 hours of hydration after his treatment.  His weight, which had been holding pretty steady after the first big drop, took a dive and he dropped several more pounds in the past week.  Cancer is a calorie burner and it has exacted its toll.
     
He sleeps in snatches and wakes up in the middle of the night.  There is an 'aloness' in illness.  No matter how much someone cares for you they can observe, but not really enter, your realm.  It is a fight you have to claim and tackle yourself.  Outside support is great,  but the inner spirit is what needs to be stoked.  Once stoked it can burn through uncertainty, fear and anxiety.  John has called on God daily to see him through this battle. While his Bible has been a great comfort to him during trials and tribulations in his life, there are days when he is unable to read; unable to concentrate long enough for the words to make sense.  At that point, he relies on prayer and knows that God is protecting him in his lowest moments.
     
 Overall, he just feels ill and miserable. However, that being said, we are looking forward to days and weeks down the road. We hope that by next week this time he will feel a marked improvement and he will be able to smile when I put on my Nurse Ratched uniform and force feed him
.   
See this picture?  During these times you look forward to the small things that bring you joy.  This is our youngest son's little boy, CJK.  My son and his wife, along with his sister, her kids and a couple of cousins, attended the Shriner's Circus last weekend.  At the end of the show they announced that someone in the audience had a sticker inside their program for a special surprise.  Guess who it was?  Our little grandson!   He won a BIKE from Toys-R-Us.    He could pick out a bike of his choice and a matching helmet, training wheels, whatever he wanted.  He found a snazzy blue Schwinn bike with a matching helmet.  What a lucky little guy! 

We are lucky, too.  We are lucky to have family that is connected in our lives.
      
After this whole process is over I think we need to get a THREE WHEELER for MyHero  too.  One of those bikes like they use in Florida --I am thinking a little horn on the front with a basket for his groceries and a matching beanie would be nice!  I'll have to see if I can find one online.  Wouldn't that be a nice surprise for him?

Thank you for dropping in to read.  

If you don't have time to leave a comment, 

don't worry about it.  

We 'know' you care and love you for just being here.  

A Quck Update on MyHero- One More Day Of Treatment Left!

Hi Everyone~

This is short and sweet (or not so sweet).

I copied and pasted it from

The Caring Bridge site.

THIS is the SWEET!

This is the
NOT SO SWEET!

John has had a really rough week.  He is sick and sore.

The nausea medicine does not always work so he has had several days when he has been nauseated.  

Try to imagine vomiting when you can't swallow because your throat is so swollen and sore.

 

He is tired and sleeping quite a bit of the time.  

That is good because it is an escape from the reality of what he is going through.

The skin on his neck is burned and sloughing off.  There is a prescription salve that he puts on that helps keep the pain at bay.

The salve, combined with the fentanyl patch keeps his pain at a tolerable level.

We do have liquid morphine that I can administer for break-through pain if needed.

This upcoming Monday will be his last radiation treatment.   We will no longer have to make daily trips to the cancer center.

After Monday, we will go once a week to check -in for the next several weeks.

We found out this week that he may be on a feeding tube for several months because of the severity of the damage to his throat.

That means that Nurse Ratched (me)gets to stay 'on duty' for a while.  I am a good "pusher" (mentally AND physically).

image

Even as ill as he is-- he continues to reach out to others.  Yesterday, against my better judgement, he went to 'visit' someone.

He felt the need to minister to his friend and to encourage him in the battle he is facing.

He came home exhausted but also elated because he felt like he had accomplished something with the visit.

We are taking this one step at a time and looking forward to starting the healing process after next Monday's treatment.

We will not know until the first part of June whether the treatment worked. 

 

At that point they will do a PET scan to see if there is still cancer in his neck--or if there is cancer anywhere else in his body.

Keep us in your prayers.  We need them.

See that cute little face up there?  That is our youngest granddaughter, Anna Ireland.  

She is one reason MyHero keeps fighting to get well.  She is a pure delight.

As for me- I would run away from home but that feeding tube only extends about 2-1/2 feet. Yeah-there's that!   Diana