week #4 into tx's (brother)
Hey everyone,
Wanted to update on my brother. He's having issues with a low white count so no chemo this week. Rads. continue. On the nystatin for thrush, so of coarse they increased the pain meds for awhile. Just starting to notice spices hurt....as is temp of foods and swallowing is getting a bit rough. I had told him this may happen, and gave him some ideas to help him through it . He does have the peg in place, so if things get worse he can still receive what he needs as far as nutrician. Chow line at the V.A. is a bit different then if you can order your meal ahead of time. I laughed at him about this and said "does it remind you of Army life ?" He didn't find it funny. ooppss!
I told him to get ahold of the nutrician dept., as they may and should make allowances for his current tx's and side effects. He is on top of the pain, and knows now to tell them before he's at an 8 out of 10 to get something for the break through pain. Fatigue is also just starting to rear it's head a bit for him. Pretty much everything is on course, and hopefully that white count comes up a bit.
If all goes well through Friday, he'll be home again for the wk. end. He did get a bit of fishing in this past wk. end with our Dad. His wife is doing pretty good with things. But as most of you caregivers know it's not been easy on her either. Keep them both in your thoughts and prayers. And as always my best to all, and hugs sent ! Katie
Comments
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katie, i'm sorry the tx is
katie, i'm sorry the tx is being so rough on him already and praying it doesn't get much worse. i'm glad he's got you in his corner so all this wasn't a shock to him. how wonderful that he and your dad got to go fishing together! that is awesome. i pray it won't be too long and they'll be out there doing it again. tell him to hang in there, it will be over soon.
God bless you and your family.
dj
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Thank you Katie
Katie thank you for the update on your brother. He's having it pretty rough so it's good to stay ahead or the pain. Never let it get ahead because that next dose only will catch it and not help it go away. You are correct that this is so hard on the loved ones and caregivers. They go through as much if not more worring then the paitent. Yes the pain we have is so hard on them as well. They do so much worring and with the lack of sleep they get, and yes, being taken for granet at times too. Remember they [the caregivers] are our rock to get us through this and we do know this, just dont tell them that enough. So thank you all for carring, you are the reason we fight this.
Mat his tomorrows be better then his today's.
wmc
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Hi Katie
Will keep all of you in prayer, let him know the pain pills is all we have some time to keep us as normal as we can be. I at first did all I could not to take them but now I think how foolish I was to be feeling bad all the time and making life for everyone around me the same. So now you bet I have my set times when I take my friend (the pill) and I feel like everyone else; I don’t overdo it but just take what is needed. Get him a NutrBullet he can carry it with him where ever he goes like I do, I will stop on the road find something I want to eat put it in my NutrBullet find a plug and down the tube it goes. It has giving me my freedom back so I can travel once again.
Tim Hondo
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Keep EatingHondo said:Hi Katie
Will keep all of you in prayer, let him know the pain pills is all we have some time to keep us as normal as we can be. I at first did all I could not to take them but now I think how foolish I was to be feeling bad all the time and making life for everyone around me the same. So now you bet I have my set times when I take my friend (the pill) and I feel like everyone else; I don’t overdo it but just take what is needed. Get him a NutrBullet he can carry it with him where ever he goes like I do, I will stop on the road find something I want to eat put it in my NutrBullet find a plug and down the tube it goes. It has giving me my freedom back so I can travel once again.
Tim Hondo
Katie, Im end week 6. Good luck to him. Try and get him to take pain meds and keep eating! If he needs to treat it like s mission! 2600 cals p/day minimum to maintain weight. Man vs. Food! Tell him he can get there through sheer will. Dr. has told me recovery quicker if you can swallow throughout treatment although I know it is not always possible and I sm not there yet. Regards, G.
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Hey Debbiejeanne !debbiejeanne said:katie, i'm sorry the tx is
katie, i'm sorry the tx is being so rough on him already and praying it doesn't get much worse. i'm glad he's got you in his corner so all this wasn't a shock to him. how wonderful that he and your dad got to go fishing together! that is awesome. i pray it won't be too long and they'll be out there doing it again. tell him to hang in there, it will be over soon.
God bless you and your family.
dj
My Dad has been a blessing to us all. He's 81 going on 55 most days. An amazing man for sure ! Tx's were going to be kinda rough as told in the beginning. With no know primary, there is more than one area being radiated. HPV + is looked at if it's SCC but the ENT said it's a bit different in tx's if it involves lymphs. I have been trying to read as much as possible on this dx. Not googling....to much misinformation out there. He's strong willed and will make it through. hugs, Katie
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He's lucky to have you, Katie...
You're a powerful positive force.....not to mention you've been around this block enough times to know that everything he's going through is normal. Glad to hear he's getting some fishing in.....that little hobby seems to sustain a lot of the men around here
. Keeping your bro in my thoughts and prayers.
p
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thanks wmc !wmc said:Thank you Katie
Katie thank you for the update on your brother. He's having it pretty rough so it's good to stay ahead or the pain. Never let it get ahead because that next dose only will catch it and not help it go away. You are correct that this is so hard on the loved ones and caregivers. They go through as much if not more worring then the paitent. Yes the pain we have is so hard on them as well. They do so much worring and with the lack of sleep they get, and yes, being taken for granet at times too. Remember they [the caregivers] are our rock to get us through this and we do know this, just dont tell them that enough. So thank you all for carring, you are the reason we fight this.
Mat his tomorrows be better then his today's.
wmc
Yes our caregivers are the most amazing heaven sent people ! Our family is trying to surround them both without overwhelming either one of them. We are a large family and some days very opinionated in our views. I'm trying to be the peace maker, and anchor for information. We as on lookers without meaning to come up with the most bizarre comments some days. I'll keep reminding my sister in law what a treasure she is, and offer to help where needed. hugs sent ! Katie
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thanks Tim !Hondo said:Hi Katie
Will keep all of you in prayer, let him know the pain pills is all we have some time to keep us as normal as we can be. I at first did all I could not to take them but now I think how foolish I was to be feeling bad all the time and making life for everyone around me the same. So now you bet I have my set times when I take my friend (the pill) and I feel like everyone else; I don’t overdo it but just take what is needed. Get him a NutrBullet he can carry it with him where ever he goes like I do, I will stop on the road find something I want to eat put it in my NutrBullet find a plug and down the tube it goes. It has giving me my freedom back so I can travel once again.
Tim Hondo
Excellant idea on the bullet ! He would love this, and use it ! I too agree on taking our meds when needed. He was very unsure of the pain meds., as he's so bull headed. Taking them on schedual only assures us of getting through the tx's. And like you my friend, if I didn't have my (little pill) my quality of life would be in the pooper - long ago. My stupid lungs are a bit worse for the wear. A bit down about this, but what do ya do right ? I will get one of the brother's on the idea of the nutribullet a.s.a.p. Thanks again Tim ! Hugs, Katie
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Hey Guzzle !Guzzle said:Keep Eating
Katie, Im end week 6. Good luck to him. Try and get him to take pain meds and keep eating! If he needs to treat it like s mission! 2600 cals p/day minimum to maintain weight. Man vs. Food! Tell him he can get there through sheer will. Dr. has told me recovery quicker if you can swallow throughout treatment although I know it is not always possible and I sm not there yet. Regards, G.
Almost count down for you my friend ! I'm so impressed, and pleased you're doing this with such a kick **** will do attitude ! I have spoken about you to my brother, and he say's "HELLO". Yes, I have told him to not give up, hang tough, keep eating (if and when he can) and to swallow, swallow, swallow. I guess if it comes to it - the peg will become his best friend for awhile. He wants this cancer gone, and is strong willed enough to do the whole entire trip. I will relay your comments to him ! You're almost there yourself. Hugs sent ! Katie
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fishing !phrannie51 said:He's lucky to have you, Katie...
You're a powerful positive force.....not to mention you've been around this block enough times to know that everything he's going through is normal. Glad to hear he's getting some fishing in.....that little hobby seems to sustain a lot of the men around here
. Keeping your bro in my thoughts and prayers.
p
P,
I agree if fishing would only cure all the woes of the world, many things would be gone forever ! Living in Minnesota, we are a family of fishermen. I don't think for myself it's about the catch. (though the stories of the one that got away, get bigger every year !) The water and the calm that comes with it can be a wonderful healing factor for some people.
You'd think with all I've seen and heard, I'd be of more help to my brother ? I think you can have the info., but at the end of the day it's up to the person facing the dx, and tx's to walk the walk alone. (mentally)
He does call alot to ask questions, and I can calm some of his fears. But what I can do more is to empower him to become his best advocate in and throughout this horrid walk. He is becoming himself a wonderful strong warrior, and survivor shortly ! Hugs sent P and we'll take all the prayers out there for him ! Katie
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Katekatenorwood said:fishing !
P,
I agree if fishing would only cure all the woes of the world, many things would be gone forever ! Living in Minnesota, we are a family of fishermen. I don't think for myself it's about the catch. (though the stories of the one that got away, get bigger every year !) The water and the calm that comes with it can be a wonderful healing factor for some people.
You'd think with all I've seen and heard, I'd be of more help to my brother ? I think you can have the info., but at the end of the day it's up to the person facing the dx, and tx's to walk the walk alone. (mentally)
He does call alot to ask questions, and I can calm some of his fears. But what I can do more is to empower him to become his best advocate in and throughout this horrid walk. He is becoming himself a wonderful strong warrior, and survivor shortly ! Hugs sent P and we'll take all the prayers out there for him ! Katie
So glad to hear that your brother is "coping". Probably not a very good description. I just know each warrior does the best they can do. Make sure the docs stay on top of that white count, so that infection doesn't creep in. In my daughter's long battle, one of the things she ended up losing was her spleen to keep her white count up for chemo. This, of course, is a last ditch effort when nothing else works.
You are a "wonder", my friend, as you offer your help while fighting so hard yourself.
Luv,
Wolfen
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All things considered it sound like he is doing well.
He is fortunate to have you as his sister, supporter and advisor.
One of the nicest things that happened to me when I went through radiation was my brother took off a week from work and flew up to stay with me and drove me to radiation treatments. I was not much fun but he made me laugh and we joked in the car and I forgot the pain for awhile especially when he had his "Starbucks attacks" and we drove around trying to find one one night.
Peace,
PJ
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on track
Week 4 is a lot tougher,I know my problem was nutrition called my dieticianist and was trying different things for the peg tube and my dietiticianist called in a high protein food sustitute called Jevity 1.5 Cal,has probiotics and vitamins and all the nutrients you prbably will need,plus the insurance company paid for it all,was kinda getting spoiled to no groceries for me,they would send me all i needed every month and also syringes to put it into the peg with,But hopefully your brother won't need to use the peg tube if at all possible.And also I had the pharmacy give me some small medicine syringes for any medication that i had to take by the peg.The nystan was almost a daily thing for me until about 4 weeks out of the chemo treatments.always took something everyday for nauesa,till about 2 weeks after treatments.Fishing I missed most of all,I was the one that normally has to throw the cast net for the bait and I was tired a lot,I wasn't worried about the peg tube I figured i could get 3 to 4 throws in before that hit me.wishing you and your brother well,Later Chris
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Hey there Wolfen !wolfen said:Kate
So glad to hear that your brother is "coping". Probably not a very good description. I just know each warrior does the best they can do. Make sure the docs stay on top of that white count, so that infection doesn't creep in. In my daughter's long battle, one of the things she ended up losing was her spleen to keep her white count up for chemo. This, of course, is a last ditch effort when nothing else works.
You are a "wonder", my friend, as you offer your help while fighting so hard yourself.
Luv,
Wolfen
I was just thinking of you and your daughter today. Hope all is going a bit smoother for her. Yes I am a bit worried about the white count myself. But they haven't added the shot yet for it so my thoughts are they're watching it closely for him. I like and will use the term coping, because for some of us that's what we do on a daily basis to get through. My thoughts and prayers continue, please let me know how things are going o.k. ? Hugs sent ! Katie
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thank you PJ !PJ47 said:All things considered it sound like he is doing well.
He is fortunate to have you as his sister, supporter and advisor.
One of the nicest things that happened to me when I went through radiation was my brother took off a week from work and flew up to stay with me and drove me to radiation treatments. I was not much fun but he made me laugh and we joked in the car and I forgot the pain for awhile especially when he had his "Starbucks attacks" and we drove around trying to find one one night.
Peace,
PJ
Yes I believe things are right on track for him. In your post you talked of your brother stepping up to be with you. What an awesome brother ! Giggling with a sibling about silly things always brings a warm feeling to me. Kind of takes away the bad for awhile. Two of our brothers live close to where he's receiving tx's. So they've been there a few times a week. Our Uncle who is also a Vet popped in on him also. He's 85, and our Mother's older brother. It kind of brings Mom closer to us some how having him around. His eyes just twinkle, and his Irish blarney is in full steam. (Mom lost her battle to ovarian cancer 4 yrs. ago) Thank you for your post, and reminding me family is so important and needed at times ! Hugs sent ! Katie
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Hey Chris !catfish_58 said:on track
Week 4 is a lot tougher,I know my problem was nutrition called my dieticianist and was trying different things for the peg tube and my dietiticianist called in a high protein food sustitute called Jevity 1.5 Cal,has probiotics and vitamins and all the nutrients you prbably will need,plus the insurance company paid for it all,was kinda getting spoiled to no groceries for me,they would send me all i needed every month and also syringes to put it into the peg with,But hopefully your brother won't need to use the peg tube if at all possible.And also I had the pharmacy give me some small medicine syringes for any medication that i had to take by the peg.The nystan was almost a daily thing for me until about 4 weeks out of the chemo treatments.always took something everyday for nauesa,till about 2 weeks after treatments.Fishing I missed most of all,I was the one that normally has to throw the cast net for the bait and I was tired a lot,I wasn't worried about the peg tube I figured i could get 3 to 4 throws in before that hit me.wishing you and your brother well,Later Chris
I'll write down some of the information you posted for him. Thank you ! I didn't have a peg during tx's, so any info. I can read is very welcomed ! He lives to fish that brother of mine. Seriously. I love it myself, but with health issues my casting is totally bad. Switched over to a cane pole. Yeap I told him about the nausea meds. I think he's using the one I used. Kind of figured into the 4th week things were going to get a bit rough for him. He has all the meds he needs for at home including the magic mouth wash. (He is absolutely impressed with this one !) Thanks again Chris ! Hugs sent ! Katie
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Hey Matt !CivilMatt said:update
Katie,
Thanks for the brother update!
I remember week 4 well. Wish him well and tell him the spice avoidance is only temporary.
Matt
I was talking with him this morning, and told him....swallow, swallow, swallow. Then started giggling, and told him of my friend Matt. I told him certain things he needs to avoid. I still can't handle pepper like I use to. Trial and error for awhile, as we are each different in side effects. Thank you for the warm wishes Matt, I will tell him. Hugs sent ! Katie
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