I kinda disappeared here for the last couple of days...

thesontupes said:

Keep sleeping so youll be ready for the next week
I liked the sleeping part..I never took time to rest and nap and i have now found a new favorite past time..I can sleep at the drop of a hat. It also made the time go by faster..One day at a time...ill be praying for you..

sounds like you are on the right path
Phrannie, don't fight the need to sleep... it's the best thing you can do right now. Sleep, pain meds, and water.... all important right now. Glad you are almost done for the week and you can get a little break from it all.

Mikemetz said:

Don't worry about us
Everyone on this list can relate to what you've already started to experience, and what's ahead. Don't fight the need for sleep, food, hydration and pain meds, or think that you have to check in on some schedule--we all know the drill, and are confident that you'll come through this healthy again. Focus your energy on the day to day things you need to do for yourself.

A tip for you. I was very strict (in a gentle way) not to allow my wife or others around me to mention any countdown of days left for rads until I looking at the last 25% of them. Of course they counted down every day from the start--I just asked them not to mention that to me until I was near the end. "2 down, 34 to go" just sounded too depressing to me, and would have made it feel even longer--like watching the clock tick, second by second.

I just got into a "Groundhog day" (the movie) mentality and let the routine of it all take over--a few times I actually lost count of how many rads I had completed/had left, and that worked well for me. Of course, once I entered my final 25%, I was all about counting down each and every one!

Find your own ways to manage this stage of your treatment and do what works for you.

mike

Thinking of you!

Thinking of you!

We're With You
Most of us slept a lot during some parts of treatment (when we COULD sleep, of course). Here's hoping you can avoid insomnia. Four rads down - great - every one you do is one less on the way. Do well.

phrannie51 said:

I'm on the three week cycles, John....
but doing amifostine everyday...a little something to keep me in touch with the jumpy tummy... . I haven't felt good enough to get involved with anything...I can't even stay awake long enough to watch a movie...LOL. I've been taking the dog on two of his walks...the 8:00 pm and his 11:00...when I seem to feel the best all day (right before bed).

I've been very good about water drinking....brought the huge freebee home from the hospital, and go thru that about 4 times a day...I'm actually very thirsty for some reason...

Ok...now, I have this small phobia forming. For those of you who did the amifostine...I'm going into sneezing fits, like bang 3 sneezes in a row coming with no warning. I scared I'll do it in the mask. Hasn't happened yet, but like I said "no warning"...and they are upon me. It's hard enough to breath in there, at least thru my nose. Should I warn the rad tech's that I've become an instant sneezer?

p

Sneezy....
You can let them know, not sure it's related to either the rads or Amifostine....

You scenario is a little different than mine is the reason you're doing the Amifostine now. It's because you are doing your rads now. Amifostine to be most effective should be taken around 10 - 15 minutes before rads. The longer past that the less effective...from my understanding.

When I had Amifostine it was during my concurrent seven weeks of chemo on Mondays and daily rads.

I had already had the nine weeks of three week cycles that you are going through now.

JG

Get lots of rest Phrannie,
Hoping the best for you!
Renee

RinMinn said:

Get lots of rest Phrannie,
Hoping the best for you!
Renee

Sleep
I sure feel for ya P51. Knowing it will end in several weeks sure doesn't help while you're going through it. Time seems to go slow...

Don't worry too much about sneezing in the mask. They can turn off the rad pretty fast if something goes wrong, like a sneezing fit. Just tell 'em.

Get plenty of rest!

Tommy

phrannie51 said:

Exactly.....
and mine is normally pretty low, so when they can't get it up past 80/54 they don't want me to get up and move around...my body must get getting used to it, tho....I was running 110/69 when I left for rads today. That was a first.

p

Excitement and Anticipation....
Blood pressure was probably up due to looking forward to another round of torture...

JG

Mikemetz said:

You got it!
Phrannie,

You have gone from scared s***less, to a mentor on this site for other newbies! I know you still have some things to experience on this journey and it will get more difficult before its get better, but keep up the great attitude and show others that the only way out is through.

mike

The bus...
Kinda cool- this bus you're travelling on with a few others, here.

Also NPC unknown, was wondering how many places you're getting the rads applied, Phrannie?
You can count them by listening to the machine/zapper. Just wondering. And approximately how long do the rad sessions last? Any issues- can PM if you have any? Not to stress to y'all that I'm the toughest guy within the Rock Island County lines,or at least on my block, but I was taking 1/2-tab of Xanax about a half-hour before my rads, and cried a lot during treatment...They put the mask on me- I cried. Onco walked in the room for any and all appointments- yep, I cried. Nurse went to hook my pumps up, I only cried a little, but that was mainly cause I passed-out. You get the picture- the picture St.Louis and Florida want you to see, LOL...Seriously, Phrannie- bus rolling along on pretty good road for you?

Any negatives with the mouth, yet? Everyone is different, remember. Sounds like a number of you are way ahead of me in regards to having stuff to deal with it all. Great info, and exactly what this forum is for- sharing info and the experience. One down, just a short ways to go.

Believe

kcass

phrannie51 said:

I have not a clue how many places
are getting radiated...I hear the machine whirr and click, and it moves around me....I even know where it is when I'm almost done...but all I want to do when they put that mask on me is mentally escape to anywhere else. When I'm at the Oncologist's office, they give me 1/2 of an Ativan right before the amifostine which helps accomplish this purpose, but also sends me for a long nap once Greg brings me home. The sessions take about 20 minutes from snapping the mask to the the table to the unsnapping.

I told myself before I got going in this that I need to be an active participant in the radiation..picture the zapper knocking the heads off those C-devils, but I'm no good at it. The need to escape the reality is so high, I just zone out and let the machine do the heavy lifting. I guess, I'll just ask..."how many places am I getting nuked?" If I remember right, the rad-onc said they'd be doing many of the nodes at first, then close the circle on where the radiation would be focused. The thing about the radiation place is....they are so booked, there is not a moment to be lost between patients...I barely have time to rinse my mouth before their pushing me to the table. I don't like that. My mouth is dry, and when the mask gets put on, my nose is squished, so I need to be able to open my lips to breathe...that takes WET....and this is just the beginning.

So far the only radiation effects I can feel are on the right side of my neck where the large node is, and my mouth is getting dryer by the day. No pain, no sores......yet.

You always make me feel better, Kent...today I was just filling the dog's water bowl and started crying....no rhyme, no reason....especially considering how lucky I am to have a husband who is being so caring, and sister's who are making sure he eats, and friends who check on me daily...but knowing you cried too, makes me feel like it's ok to let it hang out a bit.

p

How you're doing
Ativan looks to be something that'd do the trick, so to speak. One thing I would advise against is Morph- kinda freaked me out the one time I tried that before. I never did get amifostine, but it seems a lot did. For me, I used to count them, knowing the more I counted the sooner it all got over with. And the breathing thru the mouth was one thing that helped- a lot. Used to hold my teeth in an overbite position, and consciously breathe thru my mouth. And, yes, keep hydrated and do what you're doing, Phrannie, for the mouth. Cannot say I felt either of the enlarged nodes on my neck, and it did take a couple weeks before I really noticed considerable shrinkage, but everybdoy is different. You using Aquaphor, or the like, for your skin? Would advise the entire neck area- especially the back of the neck. That's where most of us take a big hit, or used to. Skin is gonna get a significant sunburn, so best to help that skin along with fighting it.

Okay to get emotional with this thing, Phrannie. For me, it was when D was on the table before knowing where it was, or what treatment options were gonna be involved. That was the roughest time for me, as all I knew for sure was that I had C, and a couple possibles existed which were not acceptable to me, and might result in my end. Do remember I had one very bad night back in 12/08. And, yeah, I mighta done the Bob Dylan thing about some river. No matter what, Phrannie, do what it takes you to get thru this. You are Priority #1, now, and must keep moving forward. Times it might seem like you're trying, but not going forward. You will be, though, if you let yourself. That is very much part of the Positive mindset. Each day you're getting one day closer to the end of tx, and back to the regular C-free life. It's like keeping one eye looking at the great sunshiny day of your life beyond tx, with the other eye dealing with all that's going-on, and those two visions have equal importance. Bus keeps rolling towards that life beyond, and think it's very cool y'all are letting us be passengers in the back of that bus.

kcass