This is the message I posted in
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-
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-
73 comments:
All good news! Aw! Dove eggs in twinkle lights!
God be with you guys. You are so good.
Progress....what a blessing. Continual prayers!
Wonder if the dove was hoping someone would nurse her babies. Hmmm?
This is such wonderful news.....maybe the worst is behind you now! hugs..
I know this has been a tough road...you both have been amazing. This too shall pass, onto the new normal!
I'm so glad to hear he is showing improvement, gosh its a battle,, amazing what one must go through to fight this beast of a disease,, the cure seems to bring you to the brink of exhaustion,, I hope the taste buds recover soon,,day by day, thats all we can ask right,,
So happy to hear things are improving little by little. The food thing has to suck because who wants to eat anything that tastes like tin. Well, except tin flavored chocolate. There's not a lot you can do to chocolate t make me NOT want to eat it! Hope your weekend is peaceful and you get your fair share of televised golfing in :)
I'm so glad to hear from you this Sunny morning! I can hear all the strength in your voice, and the gaining of each step, every day. And I wonder if you look in the Audobon, might she not be a "HOPE DOVE"? Sure looks like the very image, to me.
You KNOW you're both my Heroes.
rachel
Little birdy steps can be big sometimes.
So much good news...
And so much symbolism, if one wants to take it...
The accomplishments, of course. Each and every one.
And the mama bird in the "night light" tree. :-) Bringing forth her new life. Oh yes, hope. Hope. and little accomplishments, which each in themselves, are huge.
Gentle hugs all round,
Tess
So good to hear things are improving. One day at a time. I'm praying. And yes, even on our worst days, we who know the Lord are blessed. He never fails. Hugs my friend!
I'm so glad to hear the good news and improvement on your hero's health. Still praying! :)
Diana, this sounds like better news! I'm so happy that each day is bringing a bit of improvement! John and you are in my thoughts and prayers! Thank you for the update. Hugs and love!
Progress! Love reading about it and seeing things improve. I know that John will like being back to work, especially if he can take it slow for the first few week or so. If he doesn't have enough to do, John could start a blog. That was nice to hear directly from him. It's going to be fun to watch the mourning dove with her little brood. After that, she really needs to find a better apartment. Ha! Take care, folks, enjoy your weekend, too.
You are such a good mama bird! You've done your job well and it looks like things are on the upswing now which is a fabulous thing. I guess life is forever changed for John but it's more of an inconvenience than anything. Yes I did practice swallowing that way! LOL… gees the things you get us to do!! Much love and big hugs coming your way for both of you!
Hi Diana, this is the good news that we have been praying for . . . praise God that John is getting his life back to normal. After going through something like this, I doubt that either one of you with ever look at life and health like you did before, because these are the things in life that make us stop and enjoy even the smallest pleasures that we seem to overlook each day. Why is that, it is true of all of us, we appreciate our life and health, but not to the level that we do after walking through a valley. It warmed my heart reading this post and will be praying for growing strength each day and that on May 2 John will be more than ready to go back to work. God bless you both. This is a time for celebration.
Connie :)
Yay! Hi Diana, and this is good news and will continue to pray for John that his glands and taste buds will get back to normal! Praying he'll have the energy he needs for work. And many hugs to you for being such a good nurse! Enjoy the birds and your patio!
Be a sweetie,
Shelia ;)
Of course I am thrilled with John's improvement that is a given. But those wonderful doves are a joy, and you got 3 eggs, that is unusual. Mine only had 2, but I enjoyed watching them grow. And mine came back at night to 'sleep' after they fledged so don't get in a hurry to do away with the nest when you think they've left.
Im so happy to hear that John is feeling a bit better and is able to eat some. Prayers that he continues to gain weight and strength as he moves towards going back to work. Sweet baby birds coming. One of life's little miracles! My daughter and I were just talking about how fragile life is. So.. YES! let's celebrate it and those we cherish every single day. Blessings to you both..may your cup be filled to overflowing!
love and hugs xo
Such a blessing that spring is here, isn't it Diana! And how funny that you will now have to keep the Christmas plant as is because of the sweet momma bird! I will be praying for John and his saliva glands and taste buds that they will heal! The Lord is able! And he is so brave to be willing to go back to work so soon after coming through all this, but perhaps it will do him good. Enjoy the lovely spring weather... we have robins here, and green grass, and tulips are budding... I think it is safe to say spring is here :)
Glad to hear that things are looking up for John. As tiring as it might be, I also think that returning to work will be helpful. God bless you both. I know it's been a tough time and I am praying that the rough days will be replaced with better and better ones.
Big Texas Hugs,
Susan and Bentley
So good to read that John is improving and eating a bit. Prayers continue for his recovery and that those taste buds will perk up! Funny about the dove family making a nest among the twinkle lights. I expect mama bird loves the warmth from those lights. Blessings to you and John!
Diana, your son is right. The visual was a little too much!!
There is a product I was given when I was in the hospital and not allowed to have any liquids that helped with the dry mouth. I wonder if it would help John? I will send you the name when I find it. I recognize all those things you are describing about food, because my mother and brother both experienced those things from all the chemo.
I pray he will have strength as he goes back to work knowing the Lord will give him all he needs. Hugs, and God bless and be with you, which, of course, I know you know He is.
So good to hear good news. Go ahead and leave those lights up as long as you want,Diana. At one time several years ago, I put rope lights around our patio,"night-lights" always there when you have to jump up in the middle of the night. That's neat that the dove choose to have her babies on your patio, the two of you can watch them as they grow and then fly away. I know you are ready for John to be able to do on his own. When my hubby was going through the same thing, I think he got spoiled and still likes to be waited on..
I had surgery this week, doing good,Praise the Lord! Isn't it encouraging when our Prayers are answered.
Have a blessed day!
Diana, This all sounds encouraging. Makes me smile. John Bird will be a tough bird again soon. So happy he can swallow. Diana I keep all of you in my daily prayers. Blessings and hugs to all. xoxo, love you guys, Susie
So good to hear he's improving! My goodness, that's a lot of weight to lose. Praying he'll continue to get better and better every day and put some weight back on as well. Love that sweet little bird picture! Those mama birds are very protective. I learned that the hard way once when trying to photograph one...I got a little too close. ;)
SO glad John is on the way to recovery...baby steps will get there, too! Being able to swallow any food at all is such a good thing!
And don't feel bad, Diana...it was 75 degrees here yesterday...so I finally took my potted faux-evergreen tree off the front porch.
Keeping you guys in my prayers, but it sounds as if things are moving in the right direction! SO happy about that. As for the nursing comment, your son made me laugh! My kids react the same way at the sound of that word!! ;)
Those doves are angel birds, they are looking out for you and raising babies at the same time! Will continue to pray for your husband's recovery. I hope his co workers will show their appreciation when he goes back to his job. xx
Oh, those twinkle lights are beautiful. How nice that the mourning dove has made its home in your tree. e-mailing you now. :)
love, ~Sheri
So glad to hear that John is improving! He is an amazing man and you are kind of fabulous too!
I'm glad to hear that John is improving and doing so well. My mother has just been diagnosed with cancer, and on top of that has had a stroke. It is encouraging to hear of others who are going through the cancer trials and doing well. Blessings to you both.
Well I commented on the other blog - but you know the two of you have my heart and prayers. Sounds like good news.
Stopped in to see how its all going. Always so glad to hear of improvements! ! Hang in there!! Big friendly hugs from Charleston!
No one should have to go through what John has endured
Glad to hear improvement anyway
A good report, Diana. Just want you and John to know that our Monday morning ladies prayer group has been praying for John. Since white lights are so popular year-round now, I don't think you need to be concerned about yours. They're pretty. Hugs, Nancy
Hi Mama bird...Nice to hear some good news from your part of the world..Happy for both of you..and your family..I wouldn't worry too much about the decor...There are more important things to take care of..Have a good weekend..
It's so good to hear your good report ... I know you're a big part of his improvement. Going back to work will probably be great for him; hopefully, they'll allow him to take it easy if he needs to. Always love your positive outlook, and loved seeing that sweet dove. How fun! Love you and still praying for you all. Blessings, sweet friend!
Oh, yes, this is much better news! John, you are one fine trooper! I know it's not easy as I have a friend going through the exact same thing except that he refuses to do what he's supposed to do. All of us used to argue with him, cajole him, try to make light and then just blow up, but he won't budge. YOU have great odds now even with the food tasting as crappy as I've heard from my friend. Eat anyway, practice that swallowing....'cause if you don't, you won't have just Diana to contend with. Omg, picture it: the entire blog community smacking your backside! Hey, we're all cheering you on, you know that.
And as for you, Diana, my dear friend (and you know you are), make sure you get some rest, eat right, play right, and sleep right. All of us here are right with you and always will be. By the way, I do twinkle lights, too! I know you're not surprised ;) Sending love to you both, and talk to you soon -----
Xoxoxo OH! and PS/ I have 5 baby Finches in my front door wreath -- yes, it's that time of year.
I think that is so sweet and charming that the mourning dove is planning on raising her chicks on your porch. I am also so glad that John is able to swallow, even though things do not taste good. Is that a result of treatments? I find it frustrating that he must return to work due to insurance (Canadian talking, here) because it sounds like he could use a little more time just to continue to recover, gain weight, feel a part of things again. However, sometimes a distraction is also good. I think of both of you often (as if I know you ;) )I hope you have some nice spring weather where you can sit outside and feel the warmth of the sun on your faces. -Jenn
Such good news to hear John can swallow...I tried and that isn't easy? Wonder how babies do it so naturally? Must be horrible so have it so hard to swallow and not have the food taste good! It is good to see that John is making improvements. Inspired by your positive outlook...
Yes, I tried it and no, it isn't easy! That poor guy. I hope he can enjoy more food soon.
Brenda
Slow and sure progress! Hooray!
Keeping you in my prayers.
warmly,
deb
Diana progress everyday. It's amazing the strength that bestows you through faith. I hear taste does come back in time. When John can taste the real flavor again how about chunks of watermelon or any melon to help create salvia? Refreshing too since it consists of 90% water.
In my prayers and thoughts.
xoxo,
Vera
Keeping you all in our prayers.
xx oo
Enjoy the nice Wisconsin weekend. We are to hit 72 Saturday and Sunday. :-)
I will be taking a week off from blogging, so wishing you a great next week.
Carla
Hi Diana! Back to work soon - what a milestone. I wish John well transitioning back to work. Those mourning doves are persistent nesters! Have a fantastic weekend and soak up some of the long awaited warmth. Jane
I am so happy to hear all of these good signs of John's continued progress. I'm glad John is able to eat small bits of food and pray that will continue to increase.
I hope he has no problem laughing as you can keep him doing just that! Glad to hear progress.
I am so glad he is doing so well. Tell him to keep up the good work exercising the swallowing and eating. So proud of him and know it has to be hard to eat and even more so when everything tastes so bad. You're all in my thoughts and prayers. I'm lazy about commenting but keeping up with you all!
Diana, I am happy to hear that John is starting to feel a little better... I don't think I would enjoy my food either if it tasted tinny or sour... I love the flavor of good food... xox... I will continue to keep you and your family in my prayers xox
63 lbs. Gawd :( XOX
I'm so glad you did a blog post because I never could access the Caring Bridge to see how things were going. I know it has been a long hard road for the both of you and the family. You all have been in my prayers though. I'm praying his taste buds regain their purpose and things continue to improve.
Happy to hear news of more progress!
Im glad that JOhn is doing better. I have kept you both in my prayers. I have a list of friends who are battling cancer or someone they love is. The newest and youngest on my list is my girlfriends 5 month old grandbaby. how awful is that? Its awful for anyone. Our community has rallied and is doing all kinds of things to help them out. She has a type of brain cancer. so many prayers going up for so many people. I cant imagine how anyone deals with anything like this with out God in their lives.
anyways.. Im glad it seems that you and John are looking towards brighter days ahead, and just in time for spring. Everyday's a gift, right? we all need to enjoy them and make the most of each one.
much love you and I will continue to pray for your hero and you!
Happy day!
xoxo
vivian
So happy to hear about John's progress! Hopefully he will see and taste improvement each day. The baby birds will have a posh home. xoxo
John's attitude and yours will kick this thing!
Dianna,
I have kept both of you in my prayers and I am glad to hear that John is holding his own. I know well enough about FMLA because they have already told me that if I take longer than the 3 months for my knee replacement surgery, they will post my job. They will give me a job in the system for up to a year though. But I want my job in my department.But we still have jobs posted since last year that no one wants so I think my job will still be there when I decide to go back to work. That is if I can last another 3 years until I retire! Thanks so much for stopping by!!
Hugs,
Deb
Hang in there! We continue to think of you. :)
Ah such a sweet message. Hoping that the eating and drinking continues to improve. What a long road. Glad spring is coming. I flew in one week ago from Denver and today they are getting 1 1/2 feet of snow. But here it is nice. Spring always brings new hope. Hugs to both of you.
I tried it, it was hard! I'll be praying John get his taste buds restored soon, how miserable that must be. I know it will be good for him to return to work, I just hope it isn't full time right off the bat! He's a wonderful man, Diana, and he's been amazing through this all in my book. and you too, of course.
Well, we will continue our prayers. I will love the day when this is all just a memory.
Yep it is definitely a tough one to do! Glad John could sweep the patio and enjoy the outdoors. I hope his transition back to work is an easy one for him. You are all in my daily prayers.
This all sounds encouraging. Hope work goes well for him. Prayers for continued healing.
Wow, he is doing so well, that is amazing!! I think the going back to work will be a good thing, although he will be very tired, but to reclaim some capacity for action will feel so good, I bet.
Many good wishes and prayers to you both. X
Wow, he is doing so well, that is amazing!! I think the going back to work will be a good thing, although he will be very tired, but to reclaim some capacity for action will feel so good, I bet.
Many good wishes and prayers to you both. X
It's so good to read of Johns improvements each week! Each step forward is a blessing n itself. Hugs to you both!!
So nice to read good news. I feel bad that he can't taste the food but hopefully it will come. I had a friend that lost most of her taste. I asked her how she ate food without tasting it. She said she tasted from memory.....not sure that will work, but it's an idea!! Thanks for the update and the laughs!
Diana, I missed this one so I'm glad I visited blogland. So glad John is finding his strength. Yes, I tried it. Hard! They make me do something like that when I have my thyroid checked. My daddy didn't have cancer but had a blood clotting disorder called ITP. He had to have chemo and it left him without taste and then he got shingles in his face, ear and mouth. He had to use some kind of spray. It's probably the same thing. He was much older than John. I'm so thankful for the progress.
So thankful to hear this good news and that John continues to improve.
Prayers are answered!
Jemma
I'm so happy to hear that John is feeling better and has some "normal" in his life....even sweeping can be a good thing! It was about a month after treatment before food started tasting normal to me, and there are still things that aren't quite there. I wish John much good luck in continuing to heal and pray for strength as he goes back to work.
Warm hugs,
Carol
This post made me smile. I'm holding you and John in my heart.
Dear Diana! You are such a lovely lady. John is so blessed to have you by his side during these difficult moments. Please rest assured that I continue to pray for John's healing and recovery and also for your well-being. Take care and keep on believing and every day, you and John say "Jesus, I trust You."
So glad to read of the progress John is making. More prayers and support to you all.
Love,
Lily
Thank you for update Di. I came by several times to see update from you. I am happy that John is even sweeping the Patio. A miracle . Determination your man. Plus swallowing. I too tried the swallow. Not easy as you said. Sorry about his friend. Is he the Dentist? Oh my. So sad. Keeping you and John in continued prayer. Especially him going back to his work. He needs mighty pair to have energy wise.
Hugs dear lady from Carolann
Praying for you and your hubby Diana!
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