Posted By: EzJim Feeling terrible - 02-07-2008 10:59 AM
This morning I feel worse than at anytime during this oc. My body and head are numb and I can't figure out what the problem is. If I didn't have to make the 64 mile round trip, I would go back to bed and just lay there until the numbness left. Even my chest feels strange. But I have to go get those rads and maybe there I can get someone to check me out. Now is the 1st time I could use a CG to take me. Has anyone else had these feelings?
Posted By: debandbill Re: Feeling terrible - 02-07-2008 11:51 AM

I am so sorry and I knew this was coming. You need someone...anyone to help you. Who can you call..this is not the time to be tough. You do not need to be driving.

Wish I could be there...Florida is a bit of a drive. Now...go call someone!

Hugs, Deb
Posted By: JBNich Re: Feeling terrible - 02-07-2008 01:27 PM

At the very least, you need someone to drive you. God forbid, you have no one to help... you simply can't do all of this alone. Certainly there is somone you can even HIRE if you have to, but you've a good bit to go yet. Think about it, Jim, and be smart. God bless... if I could be there I'd help you out. Wishing you the very best.
Posted By: brenfran25 Re: Feeling terrible - 02-07-2008 01:54 PM
Do you have 'Patient Transport' like we do here?
Not ideal as they decide when to pick you up and you could be waiting for hours whilst the return patients are all ready--but you could snooze or chat to others waiting during that time.
It's a free service here and is door to door, but doubt it will be the same in every case.
I'm sure I suggested before you embarked on this 'next round', that your Pastor/Church could organise a rota for at least some of the time--that's always supposing one stubborn old guy I know, called Jim, actually LET THEM KNOW it was needed!
It's going to get a whole lot worse before it gets better, as you well know---get the family on board NOW as well, you know they're all willing and able, you've said so.
Look at it this way--it seems like forever as the patient, for them, although it may well seem like that (before all you lovely CG's beat me up!), it's only a matter of weeks/months--pretty short time which may feel like Hell on Earth--in the grander scale of things.
C'mon Jim, my heart aches for you, but you gotta do this over this weekend!!

Love Bren x
Posted By: Malka Re: Feeling terrible - 02-07-2008 02:21 PM
We would hate to see a headline "Elderly man arrested for DWI, alcohol level O, drugs and fatigue blamed."
A new facility has opened here where out of town cancer patients and their families can stay while they are in treatment. This one is run by the American Cancer Society. When you go for treatment ASK to speak with a medical social worker or patient omsbudman. They should be able to help you find an alternative to driving yourself back and forth and perhaps a place to stay and rest for a few hours after treatment if you must drive back.
Posted By: EzJim Re: Feeling terrible - 02-07-2008 03:21 PM
Thanks for caring all you great friends. I waited until it let up a little and then left. I made it there and back . They checked to see if I was dehyrated took my blood pressure, I checked out like a 20 yr ols. They did tell me to get some gator aid to drink besides thw water, so I stopped at Sam's club and bought some. Dr also ordered another MRI of my throat for the 12th. I must have an appt everyday next week for something. I just have to be looking like the moon when it gets dark. LOL
Posted By: peace4uall Re: Feeling terrible - 02-07-2008 03:34 PM
You need some rest. The American Cancer Society can give you some names of volunteers who do this and really want to do it!
You need to take care of yourself!!
Posted By: debandbill Re: Feeling terrible - 02-07-2008 03:43 PM
Did you ask for help as far as transportation is concerned. Remember, I told you that the American Cancer Society will transport you to your appts...please call them because, if not today, one day it will not "let up."

Bren, there isn't a formal transportation to clinic included in our medical system, but the ACS does a lot to help with all aspects of cancer care and treatment. Bill and I could have stayed at the Hope Lodge at Moffitt Cancer Center in a lovely suite had we chosen to stay on campus. No background check, no income verification and no cost...just if available and you have to have a caregiver stay with you. I guess the theory is that if you stay there and have money, that you will donate in the future.

Jim, you can not afford to miss your treatments....please get something in place to help you when you can not do it yourself!

Posted By: ChristineB Re: Feeling terrible - 02-07-2008 06:05 PM

Im sorry you arent feeling well.

Call the American Cancer Society. I got a driver 3 times. All the drivers are either former cancer patients or caregivers. After about the third day of my treatments, I was unable to drive myself anymore. I had about the same miles as you round trip to the hospital. The cancer society may not get a driver for everyday, but even for a few times, its helpful. They also will help with up to $300 reimbursement for medicine or mileage.

Another idea is to check with your church for help. You would be surprised at how much people want to help but dont know how. Dont be proud, its ok to ask for help. Thats something I learned from cancer.

Hope you feel better soon, hang in there.

Posted By: EzJim Re: Feeling terrible - 02-07-2008 06:51 PM
THe American Cancer Dociety doesn't have a local office in this area. I waited this morning until I felt a little better and made it there and back. Thanks for the wisdom all and if I need help, I am going to ask for it.
Posted By: davidcpa Re: Feeling terrible - 02-07-2008 09:14 PM

You maybe can drive today and maybe tomorrow but soon you physically won't be able to do it and that may last for weeks and weeks. YOU MUST GET SOMEONE TO DRIVE YOU. I'm sorry to point out to you that you will feel 10 times worse than you do now before it's over. Twenty years old or not, you will endanger yourself and others on the road if you try to do it without driving help. I speak from experience. Make sure you let everyone there know.
Posted By: EzJim Re: Feeling terrible - 02-07-2008 09:42 PM
Dave,, I seem to remember reading from someone in here how they drove and even pulled off the highway to let it all out. LOL If it gets that bad, I will get someone to drive me.
Posted By: Anne-Marie Re: Feeling terrible - 02-08-2008 09:15 AM
Jim - that was me and my son! We were on a busy expressway when he pulled over and hung his head out the door. He wouldn't let me drive even after we got off the expressway and pulled into a parking area for more "letting it all out". The day did come (finally!) when he agreed I should drive (whew!). I would strongly suggest you get a nice looking dishpan type bucket with paper towels placed in the bottom, put some smiley faces on it to leave in the car. Stock the car with some water or whatever drinks you like. Listen to David and line up some drivers, NOW! mad
Posted By: EzJim Re: Feeling terrible - 02-08-2008 10:39 AM
LOL YES MAM. This morning I feel very good so I will be fine for this one. I have the weekend off and will see how I feel comes Sunday evening. If I am sick or hurting, I will line up a driver. I hope they let me switch days for the chemo next Tue so as I don't have to spend the day with them. If not, I might have to pack a lunch and all my meds. Can't do chemo, rads and an MRI without it taking up the day.
Posted By: davidcpa Re: Feeling terrible - 02-08-2008 11:09 AM

That was also me and my stupid stubborn headed idiot of a driver, which also was me. It got so bad before I got sense that I would be driving and couldn't remember what happened in the last mile or I would go through a stoplight and couldn't remember if it was green or not.
Posted By: EzJim Re: Feeling terrible - 02-09-2008 05:15 PM
I knew that was you that said it too. LOL along with Anne_marie and here u 2 sit lecturing me. I luv it. Lost 2 more pounds somehow and down to 182 this morning. I have been eating and can't figure this one out.
Posted By: davidcpa Re: Feeling terrible - 02-09-2008 05:31 PM
Who better to tell you how to do something correctly than someone who did it incorrectly and learned the hard way the best way to do it?
Posted By: Anne-Marie Re: Feeling terrible - 02-09-2008 11:40 PM
Jim - Maybe your scale is wrong? shocked Have you been counting your daily intake of calories? Have you tried any of the Carnation VHC recipes? Some of them have 600+ calories for one serving!! Just go here for the recipes:

Posted By: JBNich Re: Feeling terrible - 02-10-2008 12:43 AM
You know that if we didn't care we wouldn't bother to let you know how we feel or what we think. You can do it, but please don't try to do it alone, especially if you have others who can be with you. And Dave... those driving things you are talking about happen to me all the time, like having gone through a light and not remembering whether it was red or green... I think that's more normal for those our age! 'Course things like that don't happen with you, Jim... right!?
Posted By: EzJim Re: Feeling terrible - 02-10-2008 02:38 AM
LOL John,, Ihave no red lights to go thru. straight shot to the interstate and then to the hospital. If I do mess up one time. you can bet someone else will do the driving. Thanks for caring , Anne-Marie,, the Drs scales reads just like mine.
Posted By: PharmGirl Re: Feeling terrible - 02-10-2008 11:26 AM

My dad has chemo on Tuesdays. One thing that shortens the wait time is to have his blood work done on Mondays. This way they know if he will be ok to have it the next morning. They wont do the blood work on Friday for Monday chemo though. This may be something you want to look into.

Additionally, waiting until you mess up one time driving is not a good idea. One time could be very serious and may not be as simple as just running a red light or missing a turn. The last thing you would want to do is to hurt someone else. I've seen the forgetfulness first hand. The other day mom drove around for almost an hour looking for the place that dad gets his hair cut. He could remember that it was in a white building but he couldn't tell her where it was. He's been living in the same town for 30 years and getting his hair cut in the same place for about 10.

Please contact the pastor of your church and ask for help. As the daughter of a pastor I can tell you that if he can't help you he will find someone who can. It's tough having to ask, but you really need help right now. It snowed here about two weeks ago and my mom didn't feel comfortable driving it it to take dad to radiation. It was so hard for her, but she picked up the phone and asked one of the men at the church if he could drive dad to his treatment. He came right over and helped out.

I wish you nothing but the best.

Posted By: EzJim Re: Feeling terrible - 02-10-2008 03:06 PM
PharmGirl.. So far today I have really nothing from the rads and chemo that give me a problem. Not even the rash or dry skin. I really feel great and attribute it to all the prayer chains I am on. Only thing that bothers me is the dryness for the treatments. If you didn't know I have OC, you could never tell it. Thanks for the avice and if I need it in the future, I will do as suggested.
Posted By: Gary Re: Feeling terrible - 02-10-2008 06:52 PM
prayer chains have nothing to do with it. Most of us can maintain some form of autonomy 3 or so weeks into treatment -but you are rapidly approaching the turning point when it is going to get exponentially worse. Please heed the advice of many who have suggested that you line up driver(s). As your pain level goes up, so will your narcotics intake to maintain a bearable pain level. You will be DUI (DWI)at that point if you are not already. Swallow your pride, get out of the denial and get some help. You DID start this topic as "Feeling Terrible" after all. Believe me, as someone who has been there it WILL get a whole lot worse (and I had lots of prayer chains to). I was the only one to survive that the prayer chains in my church were praying for...
Posted By: EzJim Re: Feeling terrible - 02-10-2008 07:23 PM
Well gary, tomorrow starts the 3rd week and I will be ready. Rads and chemo tomorrow , then tues rads and MRI. I never take the pain meds before I drive there within 3 or 4 hrs. I have had so many surgeries on other parts of my body, and 2 of them still hurt a lot. Every body part but my legs . LOL The worst ws the abdominal aortic anneurysm and 2nd my esophagus. My body thinks it's supposed to hurt. With this I will have someone at the ready.
Posted By: JBNich Re: Feeling terrible - 02-10-2008 11:58 PM
Don't know how you're doing it bro, but I'm wishing you the best. I do believe you are old enough (we know this) and wise enough (we hope this) to do the right thing. Good luck on the road, and while you're at it... keep your eyes on the road and both hands on the wheel there pal. Again, Godspeed.
Posted By: LarrysDaughter Re: Feeling terrible - 02-11-2008 03:28 AM
Jim, Thinking of you, but be careful driving and take care of yourself, ok??? smile
Posted By: EzJim Re: Feeling terrible - 02-11-2008 09:53 AM
I sure will. I have to take care of my mothers son. LOL I sure don't want her reaching down from heaven and shaking me. This morning when I was taking meds, my throat hurt so bad I couldn't tell if I had swallowed the pills or they were stuck in my throat. I will inform the Dr this morning at rads.
Posted By: davidcpa Re: Feeling terrible - 02-11-2008 10:45 AM

I felt fine through 2 weeks, most do. As Gary said it's just gets progressively worse and worse each day. I mean it's like you are in a microwave, you keep cooking even when you're not under the gun. Now stop thinking you're superman or you have something to prove to us and get someone, anyone to drive you, PERIOD.
Posted By: Markus Re: Feeling terrible - 02-11-2008 12:44 PM
some may be lucky and are able to drive to and from treatments. This is quite rare. Since you are already experiencing pain at this point you have recognize that the stuff IS going to hit the fan.

Call the American Cancer Society toll free at 1-800-ACS-2345

This is the ACS office that serves Zip 43713

Central Regional Office
870 Michigan Ave
Columbus, OH 43215
Phone: (888)227-6446

(you have the above I am pretty sure..... just in case you misplaced it.)

Posted By: EzJim Re: Feeling terrible - 02-11-2008 06:12 PM
Thanks for the info and advice all. I will call them at the 1st sign of needing help. I drove from the UPMC in Pittsburgh right after surgery had no trouble at all. I don't know if any of you have ever driven in Pittsburgh., but that is the worse traffic I have experienced and always congested, even on their interstates. What I go thru here with traffic is not a bit heavy. But when it's time, I am ready to yell help.
Posted By: Pete60 Re: Feeling terrible - 02-13-2008 09:08 AM
You really shouldn't be driving to treatment. I never knew how I was going to feel, sometimes I sleep during the hour long ride home, especially towards the end of treatment. Sleeping doesn't make driving easy of pretty. Now that I am receiving bevacizumab, an avastin drug, everyother week, with absolutely no side effects, I still do not go alone. I find a friend to accompany me, even though I drive. I never know what may happen during or after the chemo. My oncologist strongly suggested that I not come to these treatments alone.
Hang in there, it will get better, eventually.
Posted By: EzJim Re: Feeling terrible - 02-13-2008 11:06 AM
I've beeen wondering how you are pete. haven't seen you on for awhile. So far no side affects but when they come I get a driver. Have a great day.
Posted By: EzJim Re: Feeling terrible - 02-13-2008 10:16 PM
I just had my 1st bad episode from the rads and chemo. I was takin a pill and not only wouldn't it go down, the water wouldn't either. Thought I was being strangled. I can still feel it and it's been about 45 minutes ago. Any one else experience this? Scares the hell out of a person.
Posted By: Cookey Re: Feeling terrible - 02-14-2008 03:07 AM
Hi there Tiger.Guess you have just stumbled across yet another delightful side effect of the wonderful world of radiotherapy.
I had all Robs medication prescribed in dissolvable or liquid form,because he couldn't get tablets past the back of his mouth,and they sure taste evil when they start to melt in your throat.
This is an early warning sign that medication and nutrition could be going to be a problem Jim so tell your rad tech today and get some help sooner rather than later.

Your cussed determination may get you to and from your treatment,but it wont keep the pain at bay if you cant get medication into your system.

love liz
Posted By: Gary Re: Feeling terrible - 02-14-2008 03:15 AM
You can can get liquid forms of the pain meds unless they are timed release. Like Pete mentioned I had the living crap kicked out of me by week 4 and there is no way I could have either driven or tolerated the pain. By that time I was on 75 mcg of Duragesic and taking morphine for breakthrough pain. You have to get out of this denial thing before you kill yourself or somebody else.
Posted By: minniea Re: Feeling terrible - 02-14-2008 05:01 AM
Hi Jim,
I have been through alot from cancer in the past 4 1/2 years. Surgeries, radiation, all of it. You know from reading my posts that I'm pretty tough, can deal with alot and get through alot. So listen to me babe when I tell you that radiation took the wind out of my sails for a period of time and I had to adjust my thinking. I had my daughter drive me, although I do admit I could have driven myself, but I didn't. I didn't start any pain meds until about the third week and the only pain med I used was vicodin BUT that is a medication that shouldn't be used when driving. I had a feeding tube that I used from the third week for all of my nutrition although I did drink water all day long. I also used the mouth rinse, the one that contains lidocaine and some other things that help soothe the mouth. I didn't have IMRT, I had the old fashioned kind of radiation that is brutal. I lost my voice for about a week at the end, hit a time of depression when treatment was over, but I got through it. I stopped pain meds the last day of treatment although I could have used it for a few more weeks. Don't make it harder on yourself, take it from a friend.
Posted By: EzJim Re: Feeling terrible - 02-14-2008 12:19 PM
You all are such great and caring people. I kept my 8AM appt with the surgeon and then went to rads 2hrs early and they took me in and did it. I thanked them for the kindness and wished them all a happy Valentines Day. Told them to give the loves of their lives a special hug today, one they would remember. I have yet to meet anyone I haven't liked.
Posted By: EzJim Re: Feeling terrible - 02-14-2008 12:28 PM
Like always I forgot something. The Surgeon told me I made the right choice as to my treatment. I asked what the other option was. He said what we are doing or complete removal of my tongue and my voice box. I agree with him and will stick with the plan we chose. He said he wouldn't wish the tongue and voice box removal on anyone.
Posted By: suemarie Re: Feeling terrible - 02-14-2008 06:06 PM
Jim- You seem like such an amazing person. My husband had alot of trouble with swallowing during the treatments but he has a peg and that made it so much easier. Hang in there! Sue
Posted By: EzJim Re: Feeling terrible - 02-14-2008 06:37 PM
Thanks for the advice all and I intend on taking it and using it. Have great day. WOW 1 more day and 2 off LOL
Posted By: LarrysDaughter Re: Feeling terrible - 02-15-2008 11:28 AM
Hi Jim,

Haven't been on for a few days to catch up on all the messages, was out of town. Sorry to hear you are not feeling well. I hope that you can arrange someone to take you to your treatments. Even my Dad, who is the most stubborn man in the world has been having my Mom take him for weeks now. I think he only has a little over a week of them left... so hopefully the time will go quickly for you too. Take it easy, drink lots of water and stay hydrated, ok? (They are talking about putting Dad in the hospital next week if he doesn't.)

Happy Friday... and 2 days off from treatments! smile
Posted By: EzJim Re: Feeling terrible - 02-16-2008 11:40 AM
LarrysDaughter ,, I understand the hardheaded part in all of this, but I bet your dad is like me and never had to depend on anyone or anything to help him. I always hated to admit it when I need help and somehow figure a way to do whatever LOL Right now I do need help , but it has to be help that doesn't have a lot of self pity and feelings for others. It seems with some people you are always on the defensive about your cancer. This is 200% wrong and I hope I find someone with the power of thought. Each day it takes more time to get to feel half normal. I hope your dad is doing his best now and giving you and your mom a break. Have a great day,
Posted By: LarrysDaughter Re: Feeling terrible - 02-16-2008 12:52 PM
Hi Jim,

Hope you are feeling well today. At least no driving to treatments will be good. I sure do hope you find just the right person you are looking for! Keep us posted. I am actually getting ready to drive up and see my parents today. They weren't able to be with me last week for that "big birthday" I had, so we will celebrate today. Mom warned me that he looks bad, and is very depressed. Doesn't even want the dog to jump on his lap anymore. Very sad. frown
Posted By: EzJim Re: Feeling terrible - 02-16-2008 02:26 PM
I hope you have a safe trip and aren't too depressed about how your dad looks. I seem to look like a fish that has been out of water for 2 weeks. LOL Give your dad my regards ant tell him that between the 2 of us,, we'll beat the OC as team. I feel really just worn out the last few days. It's probbaly the after affects from Rads & Chemo and the Surgeons hand probing every crevice in my mouth. Have a good weekend and enjoy your parents.
Posted By: LarrysDaughter Re: Feeling terrible - 02-17-2008 02:28 AM
Thanks, Jim. He did look awful. Sad to say. He is so depressed, hardly spoke. He has lost his hair along the bottom half of the back of his head now. He just wants the treatments to be over. Mom asked me to check into what to expect when the treatments are done, so now I need to post over on that topic.

Hope you take the time to rest this weekend and let your body have some down time. No floor scrubbing, ok? wink

Posted By: EzJim Re: Feeling terrible - 02-18-2008 10:58 AM
When I go for rads and blood work this morning, it will be the right time to yell "HELP".. I have trouble swallowing anything since yesterday and will accept what ever the Dr says. Now I do think is the right time for the patches.I still have this week of rads &chemo and then the 29th I get the implants. LOL what a BDay gift, but it might be the best one I have ever received. Hard to believe my body has survived 72 yrs of the beating I've given it .But the Lord looked out for me most of the time. Have a great day all.
Posted By: davidcpa Re: Feeling terrible - 02-18-2008 07:21 PM
He's still looking out for you only I hear he wants you to get a driver because he's also looking out for everyone else. That's what I heard !
Posted By: EzJim Re: Feeling terrible - 02-18-2008 07:30 PM
LOL David, I knew I could could on you.
Posted By: EzJim Re: Feeling terrible - 02-18-2008 09:01 PM
I should add that today the Dr put me on Fentanyl patches. I hope the heck they kick in soo. I put the 1st one on at 3PM. I guess it takes about 12 hrs for the 1st to do it's job and have to take percs until then.
Posted By: scotslass Re: Feeling terrible - 02-18-2008 11:07 PM
Jim, I hope you feel better soon and start letting someone drive you to treatments. I wonder why men are so stubborn.......
my friend started treatment same time as you and is now beginning to feel rough, she cant swallow anything solid, just liquids, today she had her 15th rad. Take care.

Posted By: EzJim Re: Feeling terrible - 02-18-2008 11:56 PM
We are close in the treatment range. I had my 16th today . I hope your friend starts feeling good one day soon and I hope this old guy does too. LOL I believe we men are stubborn for a reason, to keep the ladies from running over us, Just kidding.Have a good day tomorrow and tell your friend to be glad she has you to take care of her.
Posted By: EzJim Re: Feeling terrible - 02-19-2008 07:24 PM
Well, you all were right. I have to watch out for the dehydration. I stopped for my last chemo and the next thing I knew I was getting fluids. I was dehyrated and given fluids along with 3 other small bags. I imagine they were chemo. The Dr told me of I get to feeling bad, stop at any time and the nurse will give me fulids thru an IV. Over 5 hrs on the chemo office today and close to the same at PCP office , lab and the rads.
Posted By: davidcpa Re: Feeling terrible - 02-19-2008 07:43 PM

Take them up on the IV offer. You know the one thing I regret getting was a port because every time I got dehydrated they took for ever finding a vein. Most of the time I had to have the Queen nurse find one after the worker nurses stuck me like a voodoo doll.
Posted By: ord_dfw Re: Feeling terrible - 02-19-2008 08:37 PM
My brother got fluids every time that he had chemo AND he went in at least one other time per week just to get more fluids. He still ended up in the hospital for 4 days because of severe dehydration.

David is right - take them up on the fluids offer.

Posted By: EzJim Re: Feeling terrible - 02-19-2008 09:40 PM
I already told them I would be stopping by there for fluids. The nurse was tellin 3 others getting chemo, that what I have is very unique and very painful.Both of them have been studying everything they can find about OC. LOL Only the one wants to look in my mouth and it gets her everytime. My lips are even white and bleed at the corners. Tongue is mostly white too. Have a good evening all. Not up to this tonite.
Posted By: misskate Re: Feeling terrible - 02-20-2008 03:46 AM
oh Jim I hope tthey can help you find some relief. The hydration will certainly help you through the chemo--- it definitely helped me be able to handle it. My heart goes out to you. Can't wait for you to get through the implant treatment the 29th so you can finish up treatments and start healing.

Hang in there. I'm routing for you big time. Kate
Posted By: LarrysDaughter Re: Feeling terrible - 02-20-2008 04:02 AM

Sending you hugs and prayers. Hang in there, and make sure to get all the nourishment you can, ok? smile
Posted By: EzJim Re: Feeling terrible - 02-20-2008 09:17 AM
If I don't get the mourishment I need, it has to be may fault. I have 5 cases of Carnation VHC > I helped David earn his commission. LOL
Posted By: davidcpa Re: Feeling terrible - 02-20-2008 11:06 AM

It's not about fault, even though I know you were kidding when you said that. We just sometimes CAN'T get anything down our throat without it coming back up, etc.

Also I'm not just talking about getting fluids at chemo time as that's standard protocol, I'm talking about getting them EVERY DAY form now on. I know I wish I had had the foresight to do that.
Posted By: LarrysDaughter Re: Feeling terrible - 02-20-2008 12:17 PM
Uh, my Dad too, David. I told him the advice you gave about the water, and he tries so hard. He keeps a large cup with a straw with him at all times. Same with the feeding tube, he tries, but says he gets so nauseated from it. I feel so badly for him. thank heaven for advice like yours, or we would never have known about it having not gone through it.
Posted By: LarrysDaughter Re: Feeling terrible - 02-20-2008 12:20 PM
Well, as we learned from my Dad, just cuz it is there, doesn't necessarily mean you can get it down. Hang in there! smile
Posted By: Eileen Re: Feeling terrible - 02-20-2008 07:20 PM
White tongue may be thrush. Have they checked you for it? Are you on meds for it? I can't believe they would overlook something like this, but thought I would ask.

Take care,
Posted By: davidcpa Re: Feeling terrible - 02-20-2008 08:11 PM
So much of this cancer's battle is mental and that's one reason why this site is so valuable as it can eliminate the fear of the unknown. I wasn't lucky enough to find this site until 2 weeks after my Tx ended and I guess that's one reason why I want to post because I don't want anyone to have to go thru this Tx mentally unaware of what can/will happen. There were soooo many times that I thought the cancer or the Tx were getting the best of me only to later find out I probably had an easier time than most. I know if someone had told me during Tx that I was having normal side effects, it would have made a big difference.
Posted By: EzJim Re: Feeling terrible - 02-20-2008 08:47 PM
Eileen, yes they have checked it and it's part of the cancer. At least the tumor on the center of my tongue has shrunk some. I'll double check tomorrow and make sure they did check it for thrush.
Posted By: EzJim Re: Feeling terrible - 02-20-2008 08:51 PM
David, I sure agree with you on the value of this site and all of the great people that can give advice. I would be lost without it. So far I have placed the brochures Brian sent me in 3 different offices. People are interested because this is a unique cancer and too easy to have and ignore by not thinking of a sore in the mouth as cancer.
Posted By: Carol Cunningham Re: Feeling terrible - 03-01-2008 11:07 AM
Hi everyone. Just wanted to let you know Jim had his surgery yesterday. Everything went as good as could be expected. He has a morphine pump to keep him sedated. I talked to his nurse this morning, and she said he didn't sleep well last night because of the pain. They gave him Adavan, and it knocked him out. She also said they have to suction out his mouth because it's difficult for him to swallow because of the tubes in him mouth. She said he's been really nice about everything and she also said he should start to feel a little better tomorrow. So, I'm assuming that's when they'll take the radiation seeds out of his tongue. Then he's going to stay at his daughter's. We are so thankful for that, because she's a registered nurse, and this way, our family will be able to help her as much as we all can. I'll keep you updated. God bless you all, Carol
Posted By: Suess57 Re: Feeling terrible - 03-01-2008 11:52 AM
Thanks for the update. My thoughts were with Jim and will continue to be as he recovers. Miss his witty comments and insights. Glad he has such a good support system with his family and hope to see him on the posts soon.
Posted By: LarrysDaughter Re: Feeling terrible - 03-01-2008 02:45 PM

Thank you for posting the update. I know many of us were wondering how he was doing. Hoping he is feeling our good thoughts for him! smile
Posted By: Sophie H. Re: Feeling terrible - 03-01-2008 04:04 PM

Thanks so much for the update. I really miss Jim's posts- he's always so upbeat and so encouraging and supportive of others.

Posted By: emmylou1951 Re: Feeling terrible - 03-02-2008 12:19 AM
Please tell Jim how much we care about him! Praying that he'll be better soon...

Love, Lois & Buzz in NC
Posted By: Nelie Re: Feeling terrible - 03-02-2008 08:28 AM
Thanks for the update. It's great he has such good care and support from his family through this. We miss him here.

Posted By: Dell1064 Re: Feeling terrible - 03-02-2008 11:32 AM
Thanks for the update Carol, I really appreciate knowing how Jim did with the implants. I'm glad it's over now, and he can rest and get better at his daughters.

Please send him my best, and God bless you too Carol!

Posted By: Carol Cunningham Re: Feeling terrible - 03-02-2008 04:19 PM
Hi, everyone. Well, I talked to Jim's son this afternoon. He said they got a call from the hospital last night. Jim fell out of bed. They said he's having a bad reaction to the morphine and adavan. They have him strapped down, and they couldn't put in the feeding tube, because of the hernia surgery he had in the past. Jim's kids and grandkids are getting his room ready for him at his daughter's house. His son said if everything goes okay, Jim should be home from the hospital Tuesday. He's having the surgery tonight, to remove the tubes and the radiation seeds.
This just feels like a rollercoaster ride. Thanks for your prayers and support. Love, Carol
Posted By: LarrysDaughter Re: Feeling terrible - 03-02-2008 04:27 PM
Oh Carol, thanks for the update. I hope he is okay after the fall. Poor guy, he has been through enough! I wonder what will be the next step if they cannot get the feeding tube in? Please continue to keep us all posted, we appreciate it so much. As always, sending thoughts to you and the rest of the family! smile
Posted By: Malka Re: Feeling terrible - 03-03-2008 12:41 AM
It is so good that you have been keeping up with Jim. Thanks for being there. We all have been so concerned about his bravado getting him in trouble. I add to my prayers that he not have any additional suffering from his fall.
Posted By: JeffL Re: Feeling terrible - 03-03-2008 11:13 AM
Carol -- Thanks for the updates. Jim is in my prayers constantly. Having met him in person at the James, he is a great guy and we all want this to go quickly and well for him. Thanks again.
Posted By: Carol Cunningham Re: Feeling terrible - 03-03-2008 11:20 AM
Hi, everyone. Well, surgery went good, but Jim had another bad night. The nurse said they've had an aide in the room with him because he tried to get out of bed, again, last night. The nurse said it was if he was reaching out for something, and I said, "Or someone". They gave him Halodol and it seemed to calm him down a bit. He still isn't eating. I guess his daughter said something about having the feeding tube put down his throat. But if it's irritated that bad, I would think that would really bother him, considering he already has alot of irritation in there,now. He did eat a bite of an ice chip. I told the nurse this doesn't sound too good and she agreed. I'll keep you all updated and let you know when he's at his daughter's house. God bless you all. Carol
Posted By: MegNewsome Re: Feeling terrible - 03-03-2008 11:29 AM
well just an update on jim my grandpa .. he is not doing good at all he is really really bad were not sure if he is gonna make it or not.... so keep him in your thoughts and prayers
Posted By: Cookey Re: Feeling terrible - 03-03-2008 11:33 AM
Dear god ...let him win.
Posted By: Sophie H. Re: Feeling terrible - 03-03-2008 12:25 PM
Hello, Jim's family,

Some of Jim's behavior sounds like a reaction to pain meds. My husband had terrible pain and they increased his fentanyl too quickly and too high for him and he had hallucinations and tried to wander around. He was hospitalized for 2 days and actually "escaped" once for a couple of hours. He looked like he was reaching out to something (really scary for me driving down the highway as this went on for several weeks) as he kept thinking he was seeing things. He seemed to be in a twilight sleep a good part of the time. From Jim's postings, he was not taking that much pain medication until pretty recently so perhaps that's part of the problem> I really was terrified during this time but knew if was likely due to morphine and fentanyl. He was so much better as soon as it was reduced. My thoughts are with you.
Posted By: debandbill Re: Feeling terrible - 03-03-2008 01:44 PM
Same here,

When Bill was hospitalized with neutropenia and a fever, they put him on a morphine pump in lieu of pain meds thru his peg. He looked and acted very sick...I was scared. He was hallucinating, couldn't talk well, couldn't stay awake, etc. Two days home and he was just so much better...darn near normal even though he had not finished treatments. I would be questioning the docs about this...very hard to do, I know.

Hang in there Jim and family....sending hope and strength your way.

Posted By: JeffL Re: Feeling terrible - 03-03-2008 03:13 PM
I echo what others have said about impact of pain medication. I am very sensitive to pain meds, at a lot of levels. When they gave me Demerol for my colonoscopy a couple of years ago, it was like a sledgehammer. My breathing gets real slow, and I am in "La-la Land" for a long time. My wife still laughs about taking me through Wendy's after the procedure, because I was starving. She said "Do you know what you want?" I replied "Yes", and sat there. She waited a respectful period of time, then asked "Do you want to tell me?" ;-)

Same thing with my neck dissection, except worse. They had me on morphine that night, and I was apparently hallucinating and very restless, and also had the depressed breathing. They got me off the morphine by the next morning (surgery started at 4:00 PM).

I hope it is just a reaction to pain meds. Prayers coming your way.
Posted By: ChristineB Re: Feeling terrible - 03-03-2008 03:53 PM
Thank you for the updates, I am keeping Jim in my prayers
Posted By: Nelie Re: Feeling terrible - 03-03-2008 07:45 PM
Jim is in my prayers. He's a fighter and I hope he'll pull through this.

Posted By: davidcpa Re: Feeling terrible - 03-03-2008 09:39 PM
How long has he gone without calories? I assume his docs or someone is keeping up with that? The nasal tube is definitely something to consider. I had one for about 2 weeks after my Tx had ended and it really helped me get over the final hump and it didn't bother me hardly at all.

Come on Jim fight some more, you're soooo close.
Posted By: Carol Cunningham Re: Feeling terrible - 03-03-2008 09:46 PM
It's been quite some time from what my nephew, Jim's son, has told me about him eating anything. I got a call from Jim's former wife, and she told me the hospital put him in their extended care facility. I guess he's real confused about some things, and doesn't really know where he is. They said it was from the medications. I was told he will be in there for a few days, because his doctors are all in that area. My sister and I are going down to Wheeling tomorrow afternoon and see what's going on. We're all really worried about him, and we're praying, too. I'll let you all know tomorrow when my sister and I get back. You all are so great. And we appreciate ALL the Encouragement. You are all such blessings! Carol
Posted By: Dell1064 Re: Feeling terrible - 03-03-2008 10:04 PM
Hi Meg,

My thoughts and prayers are with you and your grandpa.
Sending you a big hug to help you not be scared, and positive thoughts that he has successfully finished radiation, chemotherapy, and implants and will be cancer free and feeling well soon.

My best to you and your grandpa
Posted By: LarrysDaughter Re: Feeling terrible - 03-03-2008 10:12 PM
Jim, fight and fight hard! We are all thinking about him and the entire family. Thoughts and prayers go out to you all!!! smile
Posted By: LarrysDaughter Re: Feeling terrible - 03-03-2008 10:20 PM
What a wonderful grandaughter you are. We all love your Grampa Jim. He is in our thoughts and prayers as well as your entire family. smile
Posted By: Suess57 Re: Feeling terrible - 03-04-2008 12:05 AM
Hang in there Jim! We miss you and can't wait to have you back.
Posted By: emmylou1951 Re: Feeling terrible - 03-04-2008 12:44 AM
...NOT another one, not Jim....We're praying earnestly for him!
Damn this demon cancer!

Buzz had hallucinations during his hospitalization...saw 'blue men' working in the ceiling, etc.

Can't the PEG just be pushed directly into his stomach? I'm sure he is getting proper hydration via IV's, but I know he needs nutrition...

PLEASE keep us posted and tell him how much we love him!

Lois & Buzz in NC
Posted By: BarbT Re: Feeling terrible - 03-04-2008 08:40 AM
Hi All... i just wanted to let you all know i did get to talk to Jim on the phone while his daughter was there with him last night.. i didnt really understand what he said most of the time but at least he was able to get on the phone...Lori said the dr. said it would be good for him to have some familier faces around and he wants to see me so i am going down this morn and see him.. she said that perked him up a bit to know i was coming.. and yes i may not be there living with him but i do care for him and hope every thing goes ok and he gets better.. i will stand behind him and his healing and be there for him thru this... he has been giving the nurses a hard time and im sure its got alot to do with his meds but from being on this site with Jim im sure you all know what a charactor he can be also,, i hope by my going to see him today that it helps him alot,, from our conversation on the phone i could understand him telling me to be careful on my way down and the last thing he said was "luv ya babe" so i hope my visit helps him out a little...
i will post later to let you know how things went while i was there with him....
Posted By: Me2 Re: Feeling terrible - 03-04-2008 11:28 AM
Hope Jim is doing better. Older people can react very dramatically to being hospitalized, pain and other medications, etc. At one point my father did not even recognize me during his hospitalization - he asked me very beligerently why I kept calling him "Dad" and he tried to hit me and the PT - so out of character for my reserved, proper English Dad. My sister and I had to have a major confrontation with the doctors and nurses to A) Get them to stop pumping him full of meds that were only compounding the problem and B) Realize that there was also probably more going on than they were seeing - in his case, he had an infection in his central line and they did not realize it. (they thought he always acted like that - go figure!)

So it's really important to have people around who know and love Jim and can act as his advocate....
Posted By: peace4uall Re: Feeling terrible - 03-04-2008 04:03 PM
This is not unusual. After a 15 hour surgery, I was so full of all kinds of meds that I thrashed around for 3 days. When I woke up they had tied me to the bed. My plastic surgeon thought that I was doing this on purpose. I have no recollection of any of it! You would think the docs and nurses would see this stuff all the time! I was mortified.
Good news is when I did wake up, there certainly was no pain.
They still kept giving me oxycodone every 4 hours. It took months to get my head screwed back on right.
Just give it time.
Posted By: Carol Cunningham Re: Feeling terrible - 03-05-2008 03:40 PM
Well, we went to see Jim, yesterday. They finally got an IV in him, but cannot put in the feeding tube. He didn't look too good. There was so many things that happened, yesterday, while visiting him, and I'd rather not go into detail. Let's just say, my brother needs a direct miracle from God. Thank you for your prayers. That's what's getting Jim and us through all of this. They did have him tied to the chair because he fell Saturday night. He was still trying to get out of the chair, yesterday, when we were leaving. He did have a really good moment and told us,"I need to get better and get out of here!" I called this morning, and they said he was still confused and they had to give him pain medicine 2 times through the night. They took him off the morphine pump. He was trying to talk to us. Some things you could understand, but the majority of it was so mumbled, you couldn't understand what he was saying. There were some other things that happened, but I just can't share them on here. Please keep praying, because Jim needs a miracle from God right now. I'll let you all know what happens next. Love to all, Carol
Posted By: Malka Re: Feeling terrible - 03-05-2008 04:38 PM
To Carol, Meg, Barb and all there who are suffering through this ordeal,
Whenever you visit or speak to Jim let him know that there is a long list of people on this board who are praying for his recovery and expect him to come back on line soon. Let him know that we are waiting for his personal report and send wishes for a speedy and complete recovery.

Posted By: Cookey Re: Feeling terrible - 03-05-2008 04:52 PM
Lets all just pray this is just morphine psychosis,and he will settle now the pump is out.

prayers are with you Jim.

love liz
Posted By: ChristineB Re: Feeling terrible - 03-05-2008 05:03 PM
Carol and Barb thanks for the updates. I am still praying for Jim. My heart goes out to Jim's family and Barb. Its very difficult to see someone you love going thru this. Please keep the updates coming, we are all pulling for him.

Posted By: davidcpa Re: Feeling terrible - 03-05-2008 08:15 PM
Posted By: BarbT Re: Feeling terrible - 03-05-2008 11:38 PM
hello everyone... just wanted to let you all know this is the second day in a row that i seen jim.. yesterday wasnt real good at all i think the meds are a big part of whats got him so confused and he really is seeing alot of things and talking to people from the past.. it scared me... now today wasnt as bad.. hes still talking off the wall and seeing elephants and stuff but he was able to stay awake the whole time i was there even tho i told him he needed his sleep.. its like he was a diffrent man.. as of 4:30 this afternoon he didnt have any pain meds at all and he didnt seem like he was in much pain at all either,, they have cut alot of his meds that he was taking at home also.. i think they said hes getting the zantac and a blood thinner.. no BP meds and BP has been good.. but i guess after loosing so much weight the BP would go down also.. had a good report from the dr also today...the dr. said the cancer is gone and he doesnt need anymore treatments and the tongue and mouth look great.. now he does have an abnormality on the right side of his neck that the dr did treat with rads to keep it from getting larger and the dr wants to remove that in a month or so.. the thing right now is to get him to a place where he can get 24 hour care right now,, the dr said today that hes ready to send him home from the hospital as long as hes got a place to go..

like i said i just cant beleive the difference in what a day can make on a person... its amazing...

take care all... Barb
Posted By: Suess57 Re: Feeling terrible - 03-06-2008 12:20 AM
Thanks for the news Barb. I sure will be hoping that the news continues to get brighter and he gets to come home. I'm glad to hear that the cancer is gone and hopefully he will rebound from all the trauma of late and be right back here entertaining us all with his wit and upbeat attitude. GO JIM
Posted By: JeffL Re: Feeling terrible - 03-06-2008 02:17 AM
That is great news, Barb!!! Our prayers seem to be working!!! I knew Jim was a tough old bird when I met him at the James. :-)

Our prayers continue for his speedy recovery and return to the boards. Thanks for the update!
Posted By: ChristineB Re: Feeling terrible - 03-06-2008 07:43 AM

Wonderful news that Jim has improved. Thanks for the update. We miss him and are praying for him.

Posted By: Nelie Re: Feeling terrible - 03-06-2008 09:22 AM
I'm so glad the most recent news is news of improvement. I am praying that improvement will continue, especially as he gets of of the drugs that may have caused the psychosis. Jim has a lot of fans here pulling for him....

Posted By: mhupe Re: Feeling terrible - 03-06-2008 11:50 AM
I'm looking forward to today's update and hope the news continues to get better and better. Will continue to pray for improvements.
Posted By: Malka Re: Feeling terrible - 03-06-2008 01:53 PM
Thanks for the update. May we continue to receive good news about Jim. I am certain that being with the children and grandchildren will speed up his recovery. My continued prayers for his complete recovery.

Posted By: peace4uall Re: Feeling terrible - 03-06-2008 04:51 PM
So happy to hear this news! Just mention our names to him and tell him how much we care and ask about him. We expect a miracle and for Jim to be posting on here very very soon!!
I knew it was the meds. They had me dying for 3 days and I was
as strong as a horse(just a horse flying through the clouds). Some people just react severly to these drugs and I don't know why the docs and nurses are not more familiar with it! It angers me about them.
Take good care of him. He will get better every day in time for spring!
Sending my most heartfelt good wishes for both you and Jim
Posted By: August Re: Feeling terrible - 03-07-2008 03:44 AM
My son had a morphine reaction that gave him terrifying hallucinations. I am betting that he'll get better now that the morphine has been discontinued. I hope so. Please add my name to the list of those praying for that funny guy. He has so much spunk and has cheered the rest of us up so often with his good humor and brave approach to this, that now he deserves to draw strength from the rest of us and from our prayers for him.
Posted By: Donnarose Re: Feeling terrible - 03-07-2008 12:50 PM
Happy to read that there appears to be improvement for Jim!
I'm praying for all of you.
Keep fighting Jim!!
Posted By: EzJim Re: Feeling terrible - 03-08-2008 07:20 PM
I just have to say this for Barb,, she read me all of the posts from my cancer family over the telephone. I'm glad she posted as her and my daughter knew exacltly how I was doing daily. Neither of them ever gave up on my making this come back . I owe them both Big Time and sure will have to show it somehow. LOL As long as it doesn't cost too much. Hell, what's
money anyway? I love both those gals. They are very special.
Posted By: LarrysDaughter Re: Feeling terrible - 03-08-2008 10:10 PM
Jim, is that REALLY you? shocked Oh thank heavens! smile SO glad to see ya back here. Lots of prayers went your way, Carol and I kept in contact via email and phone, I was so worried about you! I certainly hope you are comfortable and not in too much pain. Rest and do what you can to take care of yourself!

Posted By: davidcpa Re: Feeling terrible - 03-09-2008 11:39 AM

Take it easy on the post Tx promises. I made a lot and most you will wish you hadn't made when you are your old normal self again. I speak from painful experience on this issue. My wife has this one letter I wrote to her, obviously all doped up on something and wouldn't stand up in a court of law, that she pulls out occasionally to torment me. LOL
Posted By: EzJim Re: Feeling terrible - 03-09-2008 09:15 PM
LOL David,, I sure understand the statements made while spaced out. Hell, I even saw pink elephants for a couple of days. Ihope I never have that experience again. LOL Ont thing that does burn me , I listed my house for sale 2 days before surgery. Apparently the house was shown. I am missing a 32 degree Masonic Ring and a Jules Jurgenson Wrist Watch with 20 diamonds. I don't mind the watch, but the ring is not only valuable, but has sentimental value to me as well. Old dummy here left them on the kitchen table. I already made a police report after making sure they weren't in my safe or elsewhere. I'll call Ins tomorrow. I have lost a total of 54 lbs so far. Look like a fish that has been out of water for 2 weeeks. my nose area is healing up fast and I hope the rest does too.
Posted By: Donnarose Re: Feeling terrible - 03-10-2008 02:31 AM
Hey there Jim!
So happy to read that you are doing better.....I was feeling a bit anxious like the rest of your friends here. At least now they (at the hospital) will have a better understanding of your some of your sensitivies to drugs.
Sorry about your jewelry, especially your ring...maybe someone, or you, put it somewhere 'safe' and it will show up soon.
Again, I am so happy to see you on and fighting!!
Lots of Love,
Posted By: Eileen Re: Feeling terrible - 03-10-2008 03:01 PM
Where are you gonna live when you sell the house? Did you call the realtor? I would hold them responsible for the loss. They are not supposed to let clients wander around the house picking up whatever valuables appeal to them. I'd carefully check the rest of the house also. If they were brazen enough to pick up something in plain sight, they may have been brazen enough to steal other stuff also. Does any of this jewelry have inscriptions so it can be identified when it shows up at the pawn shop? That really s..ks. I'd make certain that realtor didn't get a dime in commission from me.

Take care,
Posted By: GreenBayBruce Re: Feeling terrible - 03-10-2008 11:05 PM
Hey Jim, Good to see you back. I also would hold the realtor responsible for the ring, that stinks.
Posted By: Gabe Re: Feeling terrible - 03-10-2008 11:36 PM
Great to hear from you Jim. Have not checked the site for around a week now and went straight to "feeling terrible" to see how you were going. Maybe the topic name can be changed soon to something more positive now wink
Posted By: davidcpa Re: Feeling terrible - 03-11-2008 09:18 AM

I think you will have an up hill fight at best if you think the Realtor will accept responsibility for those 2 items unless you or someone made the Realtor aware of their position in the house in writing sent Certified Mail. Not implying anything but you can imagine that anyone could claim that anything was in their house at the time of a showing, say $1,000,000 ring. Your best and probably only viable recourse is homeowners insurance and I would get a police report number to back it up.
Posted By: EzJim Re: Feeling terrible - 03-12-2008 08:49 PM
ve no idea how or why,, but I found my ring and watch in the glove box of my T&C van. LOL funny how thigs can move themselves.
Posted By: davidcpa Re: Feeling terrible - 03-13-2008 09:03 AM
CHEMO BRAIN, we all had/have it. I guess your lucky you didn't press the issue to far or you might have been put in the slammer and would have ended up someone's b%*$h.
Posted By: EzJim Re: Feeling terrible - 03-19-2008 09:50 PM
When I saw my Chemo Dr today, he told me I was funny when I was spaced out.LOL. Hell everyone else said I was mean and wanting to fight. Dr said he wished everyone acted like I did. Live and learn I guess.
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