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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...
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
Oh Diana... it is such hard road. I'm keeping you and John in my prayers. Love the pic of your grandson!!
ReplyDeletepoor John,, it must be such a battle,,I'm so glad he has such a strong support group around him,, all that love has to help,,I think about him everyday wishing I could send something that might be a treat but I know he can't swallow yet,,gosh its been such a journey,,
ReplyDeletethat big E is amazing and the face of your Grand is even better!!
Wonder where he got that sense of humor?? lol,,,
No calories in that Brownee.
ReplyDeleteThanks for the update on John, I come to your blog and have a harder time going to the Caring Bridge site.
I love that you are keeping your sense of humor during this tribulation. My continued prayers for both of you! And a Brown "E" how very clever of your grandson! I want to remember that one! Sheila
ReplyDeleteThanks for the update. I'm so glad he has such a good group of doctors/friends/family around him. Hoping each Monday will be better from here on out. :) Now that brown E is hilarious!!! I'm going to remember that one for the future! Lol!
ReplyDeleteI can hear that adorable laugh from here!!!
ReplyDeletehe's his nana's own boy. LOLOL!
those old sayings... it's always darkest before the dawn...
this is the tedious HARD part. one step forward two back. but THEN the steps forward come MORE.
XOXOXO♥
Yes, he's his nana's boy, with all the tricks!
ReplyDeleteBrenda
Oh, I'm sorry sweetie. Sometimes things get tough, only to get better and I will continue prayers so better Mondays are ahead for your hero.
ReplyDeleteI love your sense of humor and how your spark it's still there, no matter how bad the news and every time you post us... and did you know that keeping a good humor and good spirits in hard times keep oneself in good health, which is what you need to give your hubby strength and support.
Your little guy cracks me up too, I can just imagine him in person, I will simply hug him, lol!
Wish you both a very good week.
FABBY
Regretfully, what you are dealing with is not a quick fix. Both of you need to dig deep for that inner strength. Somethings are just easier said than done. He needs more time from what I have heard others say in his condition. Also, I think it is harder for a man to deal with being sick than women. Blessings to you both and hang it. It will get better in time.
ReplyDeleteOh your poor sweet hubby - I'm sure he must be feeling so frustrated at this point, it's been such a long, hard road. Be strong, my friend, for your strength will support John as well. Love your "brown E" - too cute! xoxo
ReplyDeleteDon't get discouraged. It took a full year for my cousin to get better after her treatment. It has been five years and except for some neuropathy, she is doing wonderfully.
ReplyDeleteThis is not a laughing matter of course but when you said that John felt weak, it reminded me of something I said to my husband once.
ReplyDelete"I like my coffee strong and my men weak" haha, just so I can twirl them around my little finger...
I don't know if you ever heard of biorhythm. When we are born our biorhythm is set. On days when our physical, emotional and intellectual rhythm are alined we feel and on top of the world and are doing very well and when one of them is low, we do OK on the other two rhythms and not so good on the other one. On days when all our rhythms are low, we have more accident, we are more emotional, and cant't think straight. Those are the days we should stay in bed... and we all have had days like that. It's a rhythm... I bet John's biorhythm is the area where all three rhythms are low on the graph.
Years ago, we had a computer program that we put in our date of birth and we could chart our biorhythm and be ready for those high and lows. I'm sure such a program still exist but I haven't looked into it. I think it's more difficult emotionally for a man to feel weak as they are supposed to be the strong one.
It must be very discouraging for him and for you, but he must be glad that his treatments are finished except the hydration treatments. He will get better. Prayer for you man.
Hugs,
JB
Should be "prayers for your man" JB
DeleteAs always....keeping you in my prayers. <3
ReplyDeleteOh, that was a good one. Brown E. I actually did take brownies to the kids this weekend.
ReplyDeleteI'm so glad your hubby was told by a proper authority his need for calories. I am praying you will find a way to get those into him. I'm so sorry that he is having a hard time, but thankful for days like Friday.
Still praying.
Brown E. Love it! The littles take after their Nana, yes?
ReplyDeletePoor John, I just can't imagine. You must be a very clever and imaginative wife to keep those soft foods interesting enough for him to take in a few sips...and it must be exhausting. I'm so glad that you have the kids around to cheer you both up. xoxo, T.
I LOVE the brown E!!! will have to tell my daughter about that one, altho it's kind of a mean trick to play on teens. LOL Oh, I am so sorry for John...It must be so so hard for him. Prayers for both of you. The good days will come, maybe slower than you'd like. Hang in there!!
ReplyDeleteI wish I could say more to you, but the only thing that I can think of is take one day at a time. I will keep you in my prayers. I am sending you and John a great big hug.
ReplyDeleteHa! This reminds me of the time when I used to go with my Mother in Law to her Dr. appointments. She couldn't hear very well so it helped when I went with her. Well, I got tired of telling her she needed to walk more, so when we went to the Dr., she went to the back room first, I snuck up front and told the front desk to tell the Dr. to tell her that she needs to walk more. He did! And she got a new Doctor!!!!!
ReplyDeleteI hope your husband gets better soon. It's so hard to be happy when you don't feel well.
Cindy Bee
So very very sorry to hear of the setback....and praying PRAYING for much better days ahead. And soon!
ReplyDeleteLove you and send you hugs, smiles, and prayers from South Georgia.
Love,
Jackie
Sometimes it seems we take one step forward and two steps (or more) backward. I send you big hugs and support as you work through this journey! - xo Nellie
ReplyDeleteA brown E...love it! I see he has learned a few of your tricks, hasn't he? lol Sure hope and pray that John feels better soon. Take care and have a good week!
ReplyDeleteWell, it seems that the joker gene runs strong in your family!! I love it! Hoping John starts to feel better very soon. Prayers always!! xoxo
ReplyDeleteI pray that John will be feeling better. You both have been hit so hard.
ReplyDeleteYour little monkey sounds like YOU! xoxo ♥
And that's the only kind of brownie I should ever have. That little grandson of yours is a cutie pie and he really does know how to tell a joke. Keeping John in my prayers because he needs to and deserves to feel better. Praying, too, that he can get some extra calories in.
ReplyDeleteIt is so hard to live by faith. We see what we see, and we feel what we feel. And it is no fun to feel bad for an extended period of time. It is hard to stay upbeat when you don't feel upbeat. I am praying. And I know our God is in the midst of this. "Many things about tomorrow, I don't seem to understand. But I know Who holds tomorrow. And I know Who holds my hands." God is holding you and John in the palm of His mighty hands. Rest and keep the faith.
ReplyDeleteCancer is such a tough battle but with you by his side he will get through this.
ReplyDeletehugs
Sissie
A brown E, now that is too funny. You and the King are having a rough time so a smile is precious. I hope the King will take in more calories and have a week of improving health. And as the Queen you must rest and care for yourself too!
ReplyDeleteI saw some brown E's on Instagram! Funny!
ReplyDeletePraying for John, for encouraging increases in his energy and verve.
Praying for YOU, for continued grace and love. YOU are such a kind soul. Funny, too!
Prayers
ReplyDeleteDiana, I am adding extra prayers for John. I want him well and with all of you that he loves so much. It's not easy to have to be the bad guy is it...I know you like to pretend you are one ..shh, I won't tell anyone, but we know better. Hugs and prayers to all, xoxo,Susie
ReplyDeleteHey Diana!
ReplyDeleteAcid Reflux...my Richard has it so badly that he gets growths on his vocal cords. He has had surgery to remove them.
(He still gets these growths since his acid reflux is so bad even with the meds. Now...here is what I want to tell you, we read that it is better to sleep with your head elevated. We got one of those giant wedge pilllow thingies...ordered it from Amazon...and he said that does seem to help. Only thing, he is so far above my head, I told him that he must think that he is a KING. Typcial Brit, he said that he IS and go and fetch his slippers! HA! Fat chance!! So, just wanted to let you know about the big wedge pillow, maybe you know already. I know he must also know not to drink OJ, or to eat tomatoes or any foods with acid. Dang, if you have cancer, things like acid reflux should just piss off, if you ask me. xx
oh so sorry Diana..
ReplyDeletemy life can be so hard..prayers for you all..
hugs,Patty
Sorry the progress is so slow..I used to be "the nag" as well..not sure it was appreciated..Lots of hugs to you both.
ReplyDeleteBless you for persevering through it all! I know how discouraging not feeling better can be. My empathy and prayers coming your way.
ReplyDeleteI've been out of the loop for about a week...enjoyed some family time! I will add some extra prayers for your family....hugs....
ReplyDeleteDiana, you know men, they never listen to us. They forget we aren't nagging. My hubby seems to forget I'm caring and suggesting what to eat for his wellbeing. Tell him to get his protein.
ReplyDeleteWhat a fabulous April Fools joke
Cindy
Brown E...he got you huh? Continued prayers that your Hero will feel better soon. Take Care and have a great week :)
ReplyDeleteHi Diana! I'm sorry this is going so slowly for John. Praying for him. These guys sometimes just don't listen to us marvelous wives! Your little brownie is adorable. Sending hugs.
ReplyDeleteBe a sweetie,
Shelia ;)
I'm sorry about the struggles that you and John are going through, Diana. That's why cancer is such a devastating disease. It takes it's toll...even during the recovery process. I don't think anyone understands just how draining the illness truly is, unless they experience it...either as a patient, or a caregiver. Love to you all. Debbie xo
ReplyDeleteI will keep you both in prayer. I'm sorry this is so hard. Sending love and blessings.
ReplyDeleteMy Uncle's story is so much like your husband's. Let me tell you, progress was slow, oh so slow. It took a full year for him to regain his health and his strength and his quality of life, and I know that that sounds like a really long time, but he was always so grateful he said because some other forms of the disease cannot be overcome, this one can! Have patience dear one, my uncle is currently hiking a portion of the Appalachian Trial if you can believe it! It's 3 years post treatment though, but he has all his get up and go back! Hugs and prayers of patience to you!
ReplyDeleteSorry to hear John is having problems with GERD. Some info for you:Besides eliminating garlic breath, chewing gum after a meal might have other advantages, research suggests.
ReplyDeleteIn a small study from the Journal of Dental Research, people with gastroesophageal reflux disease (GERD) symptoms experienced heartburn relief when they chewed a piece of sugar-free gum for 30 minutes after a meal. "Chewing gum stimulates the salivary flow rate," says study author Rebecca Moazzez, Phil, clinical lecturer in King's College London's department of restorative dentistry. "Any acid that accumulates in the gut is washed away and cleared more quickly. The clearance of acid improves GERD symptoms."
Licorice has natural stomach healing properties. Eating a lot of licorice, however, can also have serious side effects like high blood pressure, so look for DGL licorice. (It does not contain the potentially dangerous glycyrrhizic acid.) Dr. Blum suggests trying chewable DGL licorice tablets before meals, which are available at most natural-food stores. There are even brands that do not taste like licorice.
Aloe vera juice reduces inflammation so "it quiets down any inflammation that is in the esophagus as well as the stomach," Dr. Sierpina says. He recommends drinking 1/2 cup before meals, but warns that the juice can be a laxative. Look for brands that say the laxative component has been removed, such as Aloe Vera Power.
The Brown E :-) LOL
ReplyDeleteSending prayers, I know this is hard. The King is a go getter, so it makes it even harder.
Lots of HUGS,
Carla
So very, very frustrating to have a good day then experience bad days and also not yo progress as fast as you want. Hang in there; better days are sure to come. God has this even when it doesn't feel like it. (Big hug).
ReplyDeleteSuch a cute little monkey with such a wicked sense of humor...brown E indeed. Lol. I think he may take after someone. :-)
Praying for strength, endurance and patience.
Cecilia
Diana, you know my thoughts are with you, John and your family... I hope they find something to help him so he can swallow with pain... xox
ReplyDeleteOh and I get taken on April 1st all day... not sure what that says about me xox lol
Dear Diana - we know those ups and downs. You seem to be handling them pretty well - at least you're keeping your sense of humour! I send prayers for better days for The King!
ReplyDeleteIt's such a long road, Diana, and I know you know. I pray things improve. It always seems to be a new hurdle. We still have issues and I truly know that advice has to sometimes come from someone else. We may be the anchor but not the ship. All you can do is be there for the ups and downs and keep encouraging your guy. I have quite a time but the alternative would have been impossible for me.
ReplyDeleteLove and big, big hugs,
Jane
We continue to lift you up in prayer. I know God is by your side throughout this ordeal...I simply cannot imagine how hard this must be. Hugs and blessings Diana.
ReplyDeleteDiana,
ReplyDeleteYour sense of humor and faith are so wonderful. You know you and your family are always in my thoughts.
Prayers always too.
xo
Jemma
Here's hoping he will listen to a third party, instead of his own wife. (Isn't that always the way?) Cute joke with the brownie (brown e). Perfectly age appropriate. -Jenn
ReplyDeleteHugs and prayers for you both... Cute April Fools joke..brown E indeed... xoxo
ReplyDeleteIt is never easy being a caregiver for someone Diana, I keep hoping John will start feeling better. I am keeping you both in my thoughts.
ReplyDeleteHugs Diane
Sorry to hear that John's progress has slowed. I know that must be very frustrating for both of you.
ReplyDeleteOn the brighter side, that little prankster is a cutie. I like his joke. Good one!
Sorry to hear that things are going slowly. Hoping for improvement!
ReplyDeleteI am hoping for a new day filled with feeling better!
ReplyDeleteSorry for the set backs. sighhhhh...
ReplyDeleteThe Brown E. Now that is an April Fools Joke, I can understand.
Gentle hugs,
Tessa
sending love and prayers, I'm still around but not blogging much, always thinking of you.
ReplyDeleteHoping things will take a turn for the better soon. Journey is always up and down, but always progress. Shocked it has been a whole month, time does pass when we are not looking. Will make sure my lights get turned on every morning again until we get a better report.
ReplyDeleteHi Diana,
ReplyDeleteUgh...so sorry to hear that he's not feeling better yet! I hope and pray that with each week things get better!
At least you have the hospital workers available to play 'bad cop'! ;)
I would have been pretty sad over that Brown-E! lol...now that was funny! ;)
Big Hugs, Kimberley
still praying for both of you. I have been thinking about you a lot lately, which reminds me to pray for his complete healing. Hugs.
ReplyDeleteContinuing to pray for you both. I do hope John feels better each & every day. Thankfully, those grandchildren always know how to add a little joy to a gloomy day.
ReplyDeleteI love the expression on your grandson's face, Diana. That is priceless. He looks like he pulled a good April Fool's joke on you. :) I think that picture would go on my fridge.
ReplyDeleteI'm sorry to hear that John is having such a terrible time with all of this. My heart goes out to both of you. He must be completed exhausted. May God comfort him through these difficult days.
love, ~Sheri
I'm so sorry Diana! Its got to be so hard and upsetting to see your hubby struggling. I'm still praying for you both daily!
ReplyDeleteThat brown E is hilarious! I bet it would be less fattening...haha!
Hugs, Amy
I admire your strength Diana....you are like the glue that keeps it all together for your family. You two are still in my thoughts and prayers...and the grands do not fall far from the tree with their humor!
ReplyDeleteHow cute! I'm sure that E got a big kick out of his joke. :)
ReplyDeleteI'm so, so sorry that John is feeling down. It's natural but difficult to observe. I think perhaps he's expecting too much of himself right now. He's been through hell and back and it takes such a toll on the body! I just wish that he could swallow...just one gift from above right now would be awesome. Then we'll accept more gifts...strength, no acid reflux, easy hydration, etc. There are so many prayers going up for both of you ~ perhaps we should be specific now? Do you think that might help? :) You have been such an incredible support and warrior during this and it's time for you to be able to run away! Lol
Seriously, sweet friend, we will keep the prayers going and give John a huge Texas hug, ok?
So much love sent your way,
xoxo
Pat
I will make you real fabulous brownies any time you want. I'm so sorry for all of you that recovery is slow going. I would be willing to come be a fat donor for John. I have enough to share.
ReplyDeleteYour humor through this hard time inspires me and I'm thinking of all of you. Let me know about the brownies.
I'm behind in my visits and had to backtrack to understand the Brown E reference in your latest post. The little acorn sure doesn't fall far from the Nana oak tree. LOL
ReplyDeleteI've been behind in my blog visits, but wanted to check in on you and John. Hoping that the good days start to outnumber the bad very soon!
ReplyDelete