rons progress

Janet and Ron,

Nausea is a bit_ _, but if you get in front of it and learn what works best, do it.  Keep swallowing and drinking water, dehydration (as you  know) blows you away.

As for food and eating, just find what works for you and  keep it up.  If it is real food, eat what you can, if it is soft food, get a blender, if it is liquids the drinks are on me.  Stay nourished!

Playing horseshoes is great exercise, but those naps sure felt good too.  Ron sounds H&N typical (if there is such a thing).  Remember to keep your team aware of any changes or new side effects, they will often have something for them.

1/3 done is great, I hope the road doesn’t get any rougher for either of you.

Best always,

Matt

janetluvsron said:

thanks matt ,
I did have to

thanks matt ,

I did have to use the blender with protein smoothies the first week, had a basic hamilton one, about burnt out the motor. checked into the vita mix one and about choked at the p rice. did find one that is called the ninja, it turned ice into a snow cone so I got it.

he eats soft foods so far and keeps going, we know that eventually he will get somewhat worse but are trying to prevent it. I watch rob and sandys posts and feel so bad for them and pray for everyone.

ron uses his compazine for nausea 2 full days during the week then its just fatigue. wednesdays and thursdays are horrible for him but then he starts to fell a little better come friday pm.

I do know that he rests and watches John Wayne movies A LOT. so he is upbeat and seems to be doing ok for now.

will be looking for those drinks at the end of this road!!!!!!

god bless you all,

janet

Keep up the great work

It is tough, you will make it, he will make it.

This week has been much better. Rob has turned the corner. Actually ate a couple bite of pizza yesterday. Couldn't taste it but he said it felt good to chew and swallow food.

I gave him a swift kick over the weekend. After consulting here I had to tell him it was time to buck up and start doing things for himself. I told him if this is how he wanted to feedl for life that was fine but I needed to get my life back. He is now taking care of his feedings, his medicine, drinking more water, moving around and gettingoutside alittle more. He says all around this is getting to be a good week.

Hang in sweetie you can do this. HOping Rob is eating some soft foods come the 4th and we will have our annual BBQ. He said he is ready to take back his life.

Love to ya

Sandy

fishmanpa said:

Discounts

Janet,

I don't know what your budget is but we "invested" in a Vitamix. They will offer a discount on a reconditioned 5200 (just a note from your doctor is needed). It came with a 5 year warrranty. Yeah, they're close to 10x the cost of many models but worth every penny IMO. The thing is an absolute beast! It even makes and cooks soup! 

You guys hang in there. 

"T"

 

 

I sent them an email with our story and they offered a discount for a refurbished model.

I emailed back thanking them for the offer but that it was still way out of my price range and that it was thoughtful of them to offer the discount. 

They called me later on the phone and said they had others read the email and that they decided to send me one for FREE. It is do to arrive this week. I was actually crying on the phone that they would do such a great thing.

I will be sending it on to someone else for free that will need it and can not afford one when we are done using it. I believe in paying it forward.

Sandy

janetluvsron said:

thanks everyone,
I never

thanks everyone,

I never heard of blendtec, but will check into the vitamix suggestion and contact them.

today ron hit a wall, extreme fatigue, "biting" at people and just abear, but its wednesday and that seems to be the norm.

He goes in at 3pm for hydration IV so maybe friday will be better.

So good to hear Rob is doing better now Sandy. You, cheries dad and T are just ahead of us and I watch you alls progress. Prayers.

I only work 2 long days a week so I can keep up with ron , house , yard and lil one. But I have great babysitter and her hubby who are good friends.

They have been a lifesaver for us. Her hubby takes ron for treatments when I work and then sits in house with him when done just in case he needs any thing.

They usually watch John Wayne movies together. old farts. lol

hey cherie, understand about your sis, been there, some siblings just take the wrong path in life, all you can do is accept their problem and pray they straighten for

your dads sake.

god bless

janet

Janet,

Indeed.  I just realize that all the emotions (anger, hurt) I carry with me will not do me any good.  She is still my sister and I pray that she does turn around.  It will take time.  It's going to take her getting released to be put to the test to see if there has really been any change. I hope she has... I'm just glad it brought comfort to dad knowig that I'm tryng while he is going through all of this right now! My parents just retired early a few years ago and they deserve the best.  All they have had though is stress so I hope that after this cancer crap, everything is smooth running!  Best of luck to Ron! Tell him not to make you bring out your momma bear! lol

janetluvsron said:

week 4

started week 4,

no weight loss!!! and the lymph node seems to be getting smaller when they palpate it. so this week is starting off good. hoping it continues.

He still eats, I know it is getting uncomfortable for him and mucous is starting but he is still making himself eat. so proud of him.

He has learned that to get the fatigue under control he has to move. he walks at the campground and played horseshoes. he even mowed our postage stamp back yard.

17 rads down, 22 to go

4 chemos down, 4 to go.

 

he did start loosing his hair a few days ago and it upset him a little and he said his body was failing him. but I told him he will just be a

sexy solar powered love machine for a while. his dad used to always say that. lol

thankyou you all for the preventative tips and help.

He is using the mugard and I was skeptical at first but I think it is actually doing good, the doctors are surprised.

thankyou you all,

god bless you all,

janet

Janet,

Glad to hear Ron is having a little easier time right now.  Hope that continues.  Hair will grow back so that's a good thing!

Dad is hanging in there. I went to visit him last night and he looked really tired and exhausted.  After today...

14 rads left, 1 chemo left.  Can't wait til treatments over for everyone going through it.

Prayers,

Cherie

janetluvsron said:

week 5

started week 5, so far so good.

last week was hell, again, fatigued and that overfull feeling and nausea even with zofran and compazine, he hardly ate. he lost 4 pounds.

so far he has lost a total of 24.

still forces himself to eat at times, fights me with the ensure. but sometimes compliant.

has the "bronzing" of the neck now, looks like a dark red neck tan. He is using aquafor twice daily and aloe also.

I read him cheries post on her dads neck and how he is doing, next thing I knew he was lathering his neck and then to the kitchen

he went to eat anything he could. so thankyou for your postings.

21 rads down of 39

5 chemos of 9 done. he is just over halfway there!!!!

the dr says his mouth is great, no sores, pink and healthy and wanted to know what we were doing.

thankyou phrannie soooo much for the mugard suggestion, I firmly believe that is the trick. He salt and baking soda rinses 4 times a day, rinses and swallows l-glutamine 4 times a day and uses the mugard.

I was very worried after week 1 since that went so horrible. His attitude is great, gets grumpy mid week and then its hell thru sat am.

But, I am determined to push his but thru this kicking and bitc....g all the way. exhauting but will do what is takes.

God Bless all of you for your advice,

Janet

Hi Janet,

Such a refreshing post. You have trained him well and he seems to be obedient and well trained now. LOL Really, Ron sounds like he is being proactive and doing as much as he can. If you start feeling sores and ulcers in the mouth, mine did not come along till later. Get a really good flashlight and start learning about each one each time you salt/soda rinse. You will see how they respond to various treatments. It goes a long way to fine tuning your efforts in the various techniques.

When I got the "sunburn" Aquafor worked great for me. I got lucky, yes I do have that word in my vernacular, and never got more than a couple spots that got pretty pink and sore but never any open wounds from the sunburn. I did get some silver silvadene and may have it used it a couple times but Aquafor did the job although it did linger for quite some time. Even today, I am 5 weeks post, I still see where the old skin came off and have fine wrinkles on my neck but no turkey neck I have heard some get. don

janetluvsron said:

Hi Don,
thankyou , I never

Hi Don,

thankyou , I never heard about when people started getting their sores, but I had seen the pix you had posted a while back and WOW that looked painful.

Did you use the lidocaine on them? and if so did it burn them?

Rons gums looked whitish grey to the rad dr and it wasnt a yeast or thrush so we are hydoflossing the gums now. hoping to get some more circulation in that area.

You are five weeks out , how is your eating? Ron will probably get thru this without a peg, we are hoping. He eats good , about 1200 calories regular food , about 2 to 3 days a week and then hard time on the others. he drinks without any problems. Its just that "full" tank feeling that you get when you know that one more bite will make you spew, and that can happen with only 2 or 3 bites.

He gets hydration IVs 2 times a week to help. The dr.s are agreeable to about anything I suggest. lol, I work in their peers offices.

3 and 1/2 more weeks to go!!!

God Bless you all,

Janet

 

Hi Janet,

I used two topicals for the oral sores, ulcers, and "patches". The patches are areas that get this sort of whitish/yellow spotted coating and it showed up most on the soft tissue at the back of my mouth but also a lesser coating on the roof which did not generate any pain. Topical Lidocaine is the liquid stuff you put directly upon the hurting area once you have done all your other rinsing and such. I never had any nausea issues so I could just apply and rub on the spots using my finger, even pressing my finger back into the deep corners underneath the base of the tongue. Once in awhile I would gag but minor vs the benefit of really getting the Lidocaine directly onto the sores which made a difference. Only thing about this is it does not last long so it really was most useful when I had a mouthful of sores and wanted to eat.

The other topical is a dental paste containing some medicine. The little tube says Triamcinolone Acetonide Dental Paste, USP 0.1%. You place a dab on your finger then quickly rub right on the sore and spread to cover it. It very quickly sets up and turns kind of waxy hard and once set is really not movable so over time you get the pace and timing to get it on and in place before it sets. It works well enough but none of the topicals have much long time effect.

The last oral treatment was the magic mouthwash and as I type I just swished and swallowed some as even at this 5 week post milestone an ulcer has returned to the back lower mouth under the base of the tongue. I have no idea why it has reappeared since all the mouth sores were banished awhile ago and not rads for even longer to provoke a return. Will ask MO this Friday.

My gums never changed color, so not much to say.

Hydroflossing as in using a waterpik? I forgot to mention this important tool during oral maintenance. My waterpik set came with this curved spoon attachement that sprays a wide arc of pressurized water. It worked WONDEFULLY to remove all the buildup on all surfaces including the ulcers and sore. It was a bit of an ouchie but you can dial it back with the unit. Sal/soda solution was used in the vessel. I'd say 1/2 teaspoon into warm water then stirring until well dissolved before using. This worked really really well and in my opinion beat back all opportunity for thrush to develop according to my understanding that it develops after infection or inflammation, like a second stage. So I worked really hard to keep the ulcers and sores from getting worse. I will say it was certainly painful at times. I would even "scrape" the sores directly to ensure everything was removed in order for the medicines and salt/soda etc to work directly on the affected surfaces. Again, I am no medical doctor so my mind can have run really wild and all this was just a placebo but as I mentioned in another thread, never discount the power of the mind over the body. If you deeply believe you are doing something to reduce the ulcer, I honestly believe you can make your body work subconsciously to apply extra healing there to do as you wish.

I love hearing the extra water fillups during the week. After early on, during induction chemo and chemo/radiation etting hit with dehydration I finally could feel when it was getting close. I asked my MO for a regular Friday infusion of saline to build back some hydration. This was in addition to the weekly chemo I received on Monday during weekly chemo during radiation. I never got dehydrated again!

As to eating, I am full on a PIG. At week 3, I could eat about 90% of days past but I just did not have any appetite and eating was a real chore, slow like a cow chewing cud, chew chew chew, sip, swallow, that sort of dance. During the past week, my appetite seems to have returned. For example, I whipped up some meat tacos last night. The meat I got from the mexican market, not hamburger, but real chopped steak. I pigged out - I think FIVE stuffed with meat and veges. I lost count. I put a lot of the creme (sour creme mix) in there to add moisture and less the need for extra sips. The tortillas were right off the oven and corn not flour but since so fresh very soft. This morning I made a SIX egg omlette with a 1/2 pound of mild sweet sausage fresh from the deli. Added mushrooms and some green onion and ate about half. I wanted my son to eat some but he sort of turned his nose at it. I used the tortillas and made omlette tacos. Yummy! Other half for tomorrow morning. So, clearly my appetite appears at this juncture about 100%. And if not for the current sore back there it would be a fully painfree experience. Having to fallback a bit to the soda/salt and MM swishes is hardly an inconvenience compared to the huge steps forward.

You really are doing great. Stay proactive, keep a positive attitude and keep driving; do not let it start swinging you around. Stay in control. It may seem like you are driving through an ice storm but you are moving and staying on the road so YOU are in control. I firmly believe once you lose or never gain control you are just a passenger going on Mr Toad's Wild Ride and will not get control until it is done with you and moves onto the next victim.

don