CANCER FREE- THREE YEARS TODAY

Many of you were here

and along for the journey as 

MyHero

fought for his life.
This is before & after cancer.

His prognosis was 

NOT GOOD.

We called all the kids home

to say their good-byes

to him just before 

Christmas in 2016.

You can read the first plea

for him here.

Three years ago today

he had his last radiation treatment

and they told him he was

done with treatment.

He fought off sepsis 

and a very aggressive form

of head and neck cancer.

A cancer that only affects

about 3% of people...

a tough cancer to beat--

a tough cancer to recover from--

a cancer that forever changes

your life.

It was a long hard battle

and he is forever changed.

It has meant adapting

in several ways.

There is a permanent 

feeding tube in place.

He cannot swallow properly,

he tires easily but is still

working as a chaplain.

This sort of thing can make you bitter

or you can accept the changes

and move forward with an

altered way of life, 

being glad that your life has

been extended even though it is

different than the life you had before.

We have accepted the changes.

It has not always been easy.

There have been up times and down times.

Let me tell you- 

having a sense of humor helps.

Sometimes you have to laugh 

at unexpected "problems".

CHEMO BRAIN IS REAL, folks.

Trust me-but don't ask for details.

Do you think THIS is part of 

Chemo Brain?

Do you think he remembers when

he was a rabbit?

In case he doesn't-

here's a little reminder.

I hope that this gives some of you 

HOPE THAT YOU CAN CONQUER

cancer or whatever life throws your way.

We have-and if we can do it-

you can do it!

Pinky Promise.

I will be around this weekend with

results for the

Pick Your Table Game.

I like to wait for people that 

don't get to blogs daily to show up.

Have a wonderful Wednesday-

I'll be getting MyHero's new costume

ready!

I'm pretty sure I can convince

him he wore this before and just

doesn't remember it!

Do you think someone should have 

warned him not to marry someone

with a warped sense of humor.....

MY HERO---OFF FOR HIS ONE YEAR CANCER CHECK UP THIS MORNING

I have some

KID NEWS

for you later--

BUT--

This morning

My Hero is off 
to have

his throat scoped

for his

ONE YEAR 

CANCER FREE CHECK-UP.

Imagine how 

EXCITED HE IS
to have 

THIS POKED DOWN HIS THROAT.

OKAY- 
He is 
NOT TOO EXCITED 

about that part.

I sit quietly in the chair

and crack jokes to make 

DR. CHARLIE PAN

laugh while he is 
doing the procedure.

Guess what?

Sometimes he has to 

STOP PROBING

because he is 

LAUGHING.

I may be banned to the waiting room

one of these days.

BE BACK LATER!
That's a threat promise!

The Storm Has Passed- Thank You!

Thank You! Thank You !

THANK YOU!!!!

The scary storm that surrounded us that we called

CANCER

has passed.

Here is a message from John to give you an update.

I will be back around blogland in the

not-too-distant future.

Here is his message as it appears on 

The Caring Bridge

Hello all. Diana and I are pleased to tell you that the PET Scan was clear and I appear to be cancer free! We are so thankful to all of you for your constant and fervent prayers and support. You have no idea how touched and blessed we have been through this whole ordeal. We have become closer as a couple and we have gained many new friends. We have learned to trust God completely for our health and well being. We have gained faith and belief in the power of prayer. We have been humbled by the love and concern others have shown for us. Thank You, Thank You, Thank You!!! In addition, I have been cleared to go back to work on June 28th as a Chaplain at Bellin Health. I will take a new perspective in empathy towards patients, especially cancer patients, as I truly do understand what they go through while on their cancer journey. For this I am also deeply thankful. We would also like to thank the Caring Bridge staff for providing this platform to share our healing experience. We know that all journeys  do not end so well, and feel very blessed that ours has come to this result. At this moment, there are so many others that need all of our prayers. With that thought in mind,this will be our last post as I seem to have made it over the "cancer bridge" as Diana so aptly named it. We hope not to see any of you on,nor need to personally use Caring Bridge for many years. We will now use it to pray for others.Thank You all once again. May God keep and protect us all, may He continue to guard and heal all of our physical bodies from sickness and harm, and may He be with you all.  

With Kindest Regards and Much Love, John and Diana.

HAPPY MEMORIAL DAY WEEKEND & Update on John

Happy Memorial Day Weekend, People.

We have lots of exciting stuff going on

this weekend.

Yes. We. Do.

Our sweet Lulu is graduating from

EIGHTH GRADE!

She is singing at the graduation mass

in the morning.

She is the only girl in her school that they 

ask to sing solos.

She is as beautiful on the inside as she is

on the outside.

A real blessing to us.

My daughter, Mimi, came up from IN

to share the Memorial Day weekend with us.

Her hubby had to work at a

Harley Davidson rally (poor boy)

but her entourage includes

TWO TREE HUGGERS

and 

ONE SCREAMER

Also called 

DIRTY GIRL~

It should be a fun weekend

with kiddos and a graduation party.

As for MyHero:

If you are wondering what a neck looks like

after radiation and chemo

this is it.

Close your eyes if you are squeamish.

There has been NO SURGERY at this point.

He is ever-so-slowly improving.

He is still very fatigued and often feels

light-headed and dizzy.

He has a hard time sleeping at night-

although he gets a few hours at a stretch.

He usually naps a few hours a day.

He still cannot eat and is using 

the feeding tube for all his meals.

Nothing 'tastes' right and he has trouble

swallowing anything other than liquids.

I am thinking of getting him a special gift

as he recovers.

He has always loved fish.

Wouldn't this be an

ABSOLUTELY PERFECT GIFT?

There are even online demonstrations!

If you have never seen this you have missed 

something special!

It is only THIRTY SECONDS LONG.

Turn your volume up and enjoy this

FREE DEMONSTRATION!

Looks good, doesn't it?

In every dark cloud there is a silver lining, right?

I don't have to COOK!

I can have a huge bowl of ice cream salad 

for every meal

and no one says a thing.

AND-Whenever MyHero says he doesn't feel

VERY USEFUL

I remind him that he certainly has a 

God-given purpose in his life.

See what I mean!?!!

HAPPY (and I do mean SMILING HAPPY)

Memorial Day!

DANCE FOR JOY and AN UPDATE ON JOHN

Happy Tuesday!

Sounds like a movie, doesn't it?

Starring:  Sweet Cheeks and MyHero.

For those of you that don't read 

The Caring Bridge,

I am copying that message over here.

If you already read the post there 

please don't feel

you have to make a comment here, too.

I know that time is a precious commodity.

Here is the post:

Remember when you were a kid and the days just seemed to drag out forever?  Only in summer when you were on vacation from school did the days seem to fly past and summer ended long before you were ready to go back to school.

Time has marched very slowly for us these last few months.  Six bad days followed by one tolerable day---five bad days followed by two bearable days---finally a week or two with a "good" day. etc---and then fast forward.  Today John has had a few good days in a row followed by set-backs.  There are days when he still feels nauseous and there are days when he feels very weak.

He has taken a couple of falls due to weakness and dizziness.  The last one being a bad fall yesterday.  Today, he is using some pain killers again.  He had pretty much given those up-just taking nausea control pills and something for thrush mouth.  If you have not had thrush mouth, you do not want it---trust me on this.

A week from today he is going to attempt to go back to work.  I don't know if he is ready but he has to do it for his insurance and benefits.  He will have to see what he can tolerate and cross that bridge when he comes to it.  For today, and the rest of this week, he is laying low, recovering from his latest fall, and gearing up/praying for the strength to be an effective chaplain again.

The cards and well-wishes continue to be a blessing to John.  A friend of ours sent him a prayer shawl.  He wears it all the time which took me totally by surprise.  I think it is going to be like trying to wean a baby from a pacifier to get it away from him! Remember when your kid(s) wore the same thing day after day and you had to creep into their room at night and "steal" it so you could wash it--hoping they wouldn't miss it.  What was the first thing they did in the morning?  Start a frantic search for "my favorite outfit".  I can see a replay of that in my future here. Hmmmm...maybe he is in his 'second childhood'?

It has been cold, rainy and dreary here for most of the spring.  It is sometimes hard to remain happy and upbeat-especially when you feel sick.  However, there are little things that make John smile.  He got a big smile out of seeing our little SweetCheeks (Julia) in her dance costume as she prepares for an upcoming recital. (picture at the top).   She always makes him smile with her droll comments.  Never one to mince words she says things like "that's gross" or "YUCK" when John coughs/hacks/spits/etc.  It is not the words as much as it is the accompanying eye rolls and facial expressions that makes me laugh. If she is sitting on the sofa she moves as far away from him as she can with a close eye on his "sick things" so that she doesn't get too close to them.She is not even aware that she is doing it.  I have found that we take our laughs where we can find them these days.

I think the next post will be from John as he prepares to go back to work and then we will probably give our Caring Bridge posts a rest for a while until after John's PET scan in June---unless there are some major changes before that...(please Lord NO MORE of those).......

Blessings to all of you- thank you for praying for us so faithfully. You all are the best!!!!  Diana

I will be back in a couple of days

with a report on your prayers

for Ron Tomes & his family...

and I will attempt to play catch up

on some things that have happened

that have NOTING to do with cancer.

Thank you, Lord, that there

ARE THINGS

that have nothing to do with cancer.

It is so easy to let cancer dominate

your every waking moment,

as some of you know all too well.

It is good to be distracted 

with other things that are part

of 'real life'.

Have a wonderful, blessed Tuesday.

THE BIRDS OF SPRING!!! A MOURNING DOVE AND THE JOHN-BIRD

This is the message I posted in 

THE CARING BRIDGE 

this morning.

I know some of you can't access that site

so this is for you.

Good Morning!

We have survived another week  post-treatment!  We have seen some definite improvements this week!  

John had two appointments this week for assessment and 'training'.  He learned some exercises that he needs to do daily that will help him learn to swallow properly again. One of them is to hold your tongue between your teeth and then swallow. Sounds easy, right?  Go ahead-try it- I'll wait.  Y'all did it, too, didn't you?  I know you did.  Not as easy as it sounds, is it?  It is kind of what a baby does when they are nursing-the undulation of the tongue that takes the milk/food to the back of the throat and down.  Yeah---NO NURSING allowed here--so the exercise is his only option.  I said that to my son and he said that even saying NO NURSING created too horrible of a visual to even think about.  So-there is your smile for the day. You're welcome!

Some of the exercises he will have to do for the rest of his life; others are temporary while his face/neck is retrained.  We also found that all of his saliva glands were destroyed except for one large one on the far back right side.  Simply put, this is a 'reactive' saliva gland and only works when called upon to produce saliva--as when a person chews.  That means that John will most likely have to chew gum during his waking hours.  At night, he has a throat spray that sits by the bed that he can use to moisten his throat when he wakes up.
  
He started trying to eat a bit this week.  He found that he CAN get food down his throat now.  However, NOTHING tastes right!  His goal this week is to drink one liquid protein drink over the course of a day-whether it tastes good or not.  He is also going to eat a half cup of soup or applesauce or something soft each day.  Everything tastes bitter, or sour, or tinny at this point.  Hopefully, some of his taste buds will regenerate. Meanwhile,  I am still tube feeding him about 2400 calories a day.  He has lost a total of 63 pounds since last Fall at this point-but, as of this last week, he is now holding his own.

He has set a goal to go back to work on May 2nd.  He really doesn't have a choice because of insurance and no more FMLA (family medical leave).  So, ready or not, he will have to go back.  I think, at this point, that he will be able to handle it.  It will tire him out but also be good for him to feel part of real life again.  Being sick and in limbo is no fun at all but I think John has handled it pretty well.  The golf channel has had quite a workout and ROKU has been a life-saver for those long nights when sleep will not come.

We have put off doing things we normally do-inside and out.  However, yesterday was a nice day and for the first time since last Fall John spent a bit of time out on the patio.  He swept the patio off and enjoyed the fresh air.  I decided to brush off the small side porch we have off our dining room.  I am just a LITTLE BIT LATE.  I had an old urn that I placed in the middle of the glass table out there around Thanksgiving time.  I stuck some greenery and berries in there and put some twinkle lights on it in preparation of the Holidays.  Those twinkle lights have acted as a nightlight when we get up in the middle of the night.  Well, we can enjoy them for a few more weeks because a mourning dove has taken up residence in the "tree" and laid three eggs in a nest.  I took the picture through the window (screen) from our kitchen window.  Oh well!  If anyone asks I will tell them we are headed towards Christmas in July! Gotta love how those Mama Birds protect their babies.  She never took her eye off me the whole time I was watching her.

Speaking of BIRDS~The next message here will come from John.  If he is well enough to sweep the patio he is well enough to type! RIGHT????!!!!!  This Mama Bird is pushing the John Bird out of his comfort zone.  

It is time to 

GET WELL, BABY!!!!!  
 
Thank you for reading and visiting and continuing to support us in prayer and well-wishes.  We are blessed---even in spite of cancer---we are blessed.  Have a wonderful Spring weekend and live life to the fullest.  That is what we are trying to do!   Love to all of you- 

An Update on John and I Got Fooled!

For those of you that can't access

The Caring Bridge

here is the post that appears there today.

Good Morning~

Sometimes it seems like it is one step forward and two steps back.  Friday was a good day for John.  He took a ride with our son and came home feeling pretty good. On Saturday he said he did not feel very well and Sunday proved to be a very hard day, emotionally and physically, for John.  

He said he feels helpless and weak at this point.  He is not seeing much improvement and the lack thereof is exacting its toll.  We both thought that by now he would be feeling a lot better.  It is now a full month since his last treatment.  However, not being able to swallow means we still go to the cancer center for hydration three times a week. We are there about three hours and he is able to sleep most of the time.  Just getting a shower and dressing to get there takes a heavy physical toll on him.  He continues to experience severe acid reflux and, while the medicine does help a bit, it is ever present. 
 
As of this morning he has dropped a few more pounds.  We see the radiation oncologist on Wednesday so I am sure John will get a little 'tune up' about taking in more calories then. He does not like ME telling him that he needs to 'eat' more. (I will let the Doctor tell him-it gets ME (The Queen) out of the "you should" position)

Well, I am smiling now.  We are AT the cancer center and the nutritionist just came in (as I was writing this) and gave The King a little 'pep talk' about adding some more calories into his feeding regime.  That takes the proverbial monkey off MY back.  Speaking of MONKEYS!  On April 1st a little monkey called me and said he was bringing me a BROWNIE for dessert.  Now, you all KNOW I love a treat (or two or three).  So, I was looking forward to getting my BROWNIE.  Sadly, as you can see ---it was NOT what I was expecting. It was a BROWN E.... Just so you know---I decided NOT to EAT IT!.  Hmmmm....wonder how much weight that would add to the old boy if I could get it through his feeding tube?  just a thought...

...
Hope you are all having a great Monday.  We are looking forward to each Monday being a better one here.  Diana

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

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.  

AN UPDATE on MyHero CROSSING THE BRIDGE

image

I know that not all of you visit 

The Caring Bridge

where I do updates on John's cancer journey.

I am copying and pasting my morning post here.

You don't need to comment-

although you are welcome to do so.

However, if you only have time to read and run

that is just fine, too.

Good Morning! 

We feel like we are crossing a bridge.  It's an old rickety bridge that spans the Cancer Chasm; a  bridge that has weak spots in the floorboards that could let one plunge through with a misstep. The guardrails on the sides are ineffective at best - no longer offering security as they once did.  There is nothing tangible to grab and hold onto.   It is a bridge that is not longer car worthy so you can't drive across it.  You have to walk slowly and skirt all the dangerous spots.  Sometimes you have to step on the weak spots even though you don't want to do so.  You carefully test that area before you put your full weight on it, breath a sigh of relief when it holds up under your weight, and then you carefully move forward to the next safe spot.  You don't look down because you don't want to know how far you have to fall--so you look straight ahead to the goal on the other side  and you look up to the heavens for help.

John has worked his way almost all the way across the bridge.  He has dealt with nausea, pain, burning, anxiety, fear, insomnia, exhaustion, weight loss, inability to swallow, frustration and all around discomfort. 

He has dealt with all those pitfalls admirably with determination and resolve.  He has been able to manage his nausea and pain with medications (most of the time).  He has learned to let me feed him and not complain about having to take 'one more Liquid Refreshment' (which most of you would call Ensure or something similar). At this point he sleeps quite a bit of the time.  It is hard for him to talk and concentrate so he is no longer visiting with people.  He has chemo brain (which he will deny so then you KNOW he has it) 

His biggest strength, of course, comes from the Lord.  He is in constant prayer-not only for himself but for others around him.  He prays for our kids and grandkids so that they can deal with the changes in Dad/Papa.  He prays for me (that I won't poison him when he is in a snit).  I have told him he is not allowed to touch the attendant during feeding time (me)-no matter how bad the jokes are.  Sometimes I can still get a smile out of him. 
  
He prays for the people we see at Bellin Cancer Center.  Some of the people we see there will not be cured and it is heartbreaking.  When this is all over he hopes to return to his position as a chaplain.  Although he has always prayed for people in the hospital, and felt sympathy for them, he now has a whole new understanding of the full range of emotions they experience. 

We are on the COUNTDOWN TO THE CURE here. We have one more week and one more day of treatment.  We feel like we can see the safe ground on the other side of that rickety old bridge. 

We thank you for all your prayers and good thoughts.  They have bolstered us on this journey. 

Have a wonderful weekend- Diana ps.  When I hit safe ground I am getting into a convertible and speeding away...and if MyHero is NICE to me I MAY take him with me!  Anyone got one of those police radar devices I can borrow? 

image

PLEASE PRAY ABOUT THE CT SCAN SCHEDULED FOR TODAY

Good Morning!

Just wanted to share a picture of

MyHero with three of his granddaughters

at the annual

Daddy/Daughter Dance 

at their school

taken last Saturday night.

This will most likely 

be his last social outing

until his treatments are completed.

Sorry for the poor quality.

It was an Iphone in the entryway-

NO MOMS (or Nana) ALLOWED!

However,

that is not the real reason for this post.

I know- I know-

I feel like I am starting to sound like

A BROKEN RECORD!

We need some prayers here.

If you are not a pray-er, please

send us well wishes.

John has a CT scan scheduled today.

There were some small spots on his lungs

when he started this whole process.

They 'think' the spots may be from

something that he inhaled

when he had the severe infection

in his neck-

or a residual effect from that infection..

If that is the case,

the spots should either be gone-

or should have remained the same.

The spots were too small to biopsy

so the CT scan is the only way

they can track them.

Please pray there are no new spots

or that the ones that are there

have not enlarged--

or best case scenario--

the spots have disappeared!

I will let you know what happens

when we get the results back.

We are hoping to hear something

by Friday.

We need to get this old boy well

so he attend some more dances 

with these sweet girls..

Also, pray he can keep his weight steady 

and even gain a bit of weight.

I don't know about most of you,

but praying to gain weight 

is not something

I have ever done!

It just kind of goes 

against the grain, doesn't it?

Okay-Now that you all have been 

so patient with me and my requests,

I want to show you something pretty special.

This is my 13 year old granddaughter, Lulu,

dressed up for her last 

Daddy/Daughter Dance

at her school.

Isn't she a beauty?

I might be a little biased-lol

I can look at her here and picture

what she might look like as a bride someday!

Here she is with her two sisters.

Ria has 2 more years of 

Daddy/Daughter Dances

and SweetCheeks has 5 years to go!

Is there anything sweeter than sisters 

laughing together?

There you have it-

another dance step in our lives.

Hmmmm...maybe the old boy will take

ME dancing when his treatment is behind him.

I think there is a special event 

coming up at the 

VETERANS CLINIC 

where I volunteer.

I've got the perfect little number!

Won't MyHero be proud to be

seen with ME in THAT?!!??!!

Thanks in advance for your prayers!

Have a wonderful, blessed day!