Where is Everybody???

COBRA666

onlytoday said:

We all have our stories...
Man, this disease just sucks. I also noticed that everyone was quiet and wondered. Thanks for getting us motivated John. I had a rough week with myself. Just the feeling of the aches and pains and what is lymphoma and what isn't and the the overwhelming feeling that there isn't a cure right now. So... I had a moment or two on all of that. I had a couple of days where I just could't shake it.

Feeling better now, looking forward to having my daughter and her boyfriend here for a couple of days. Food, laughs, and a big love fest.

I pray for all a great Thanksgiving. I start everyday thinking about what I am thankful for. You all are right there. God Bless.

Donna

Aches and Pains
Donna,
No matter what simple ache and pain we have we always assume it is a lymphoma reaction. I know we all do that. I am probably the worse one for it. Your hand gets stiff or your knee gets an ache and you think "Oh my gosh its the lymphoma getting into my joints now".Sound about right? If your hand would have gotten stiff or your knee started to ache a few years ago you would have shrugged it off as a strain. You know it is perfectly normal to think that way now. Hey, we have all gone thru a lot of stuff with this disease. We don't really know the future and whats gonna happen. You know what else,
we never knew what the future would bring before we even got this disease,but we never gave it a second thought. Who does? We all get down once in a while when we think of the "What Ifs". I am hopeful they can keep us all in some sort of remission until they can find a cure. They will one day and the sooner the better. Take care and be talking to you. Have a great Thanksgiving. John(FNHL-1-4A-5/10)

allmost60

dixiegirl said:

Busy
We brought Sam home Thursday evening and it's been a whirlwind of potty training and playtime around here John. Didn't even get a chance to turn on the computer yesterday.

Lots of errands, and of course you know how it is....puppy breath is addicting and just watching this little uncoordinated furball run is so funny. The silly dog has a very nice crate, a huge dogbed....where does he fall asleep? In the toy crate LOL.

Getting back to ourselves and finding our new normals takes time. Give yourself a few months.

Talk to you later.
Beth

Sam
Hi Beth,
So glad you have Sam at home now and enjoying all the "puppy" laughs he brings. I still have pieces of furniture with teeth marks from puppy days of the past. I also remember a few pairs of my favorite shoes being shredded from forgetting to close the closet door! The boys would drag them home and promise to take care of them, but we all know how that turns out...ha! Enjoy your precious Sam my dear, but don't forget...nothing is off limits as the little darling explore's his new surroundings! Love..Sue (FNHL-2-3A-6/10)

merrywinner

COBRA666 said:

Hard to explain the eyes
Mary,
It is hard to explain the eye thing. I guess it is like they feel heavy. If I close them then I feel fine. I know I have dry eyes. I got some drops that Sue recommended called Soothe from Walmart that helps with the burning. Still have that heavy feeling though. I still,like you have a day now and then that I will go in to watch TV in the bedroom and fall asleep for a couple of hours. I know what you mean about every little twitch in your body too. Little aches,pains or something that doesn't feel just right and the mind goes off in another direction. Those same little twitches a few years ago were normal and we never gave them a second thought...but now!!! You had the R-cvp as well,right? Thats what I had and glad it wasn't the R-CHOP. I know your diagnosis was the same as mine. I hear R-CHOP is much harsher on people. I read or saw somewhere that they are using it less and less due to newer types of chemo. I have heard they are using the zevalin more often now. Then,that may be hear say only. Thats why I stay away from those websites. One says one thing and the other says another. John(FNHL-1-4A-5/10)

Sorry John
Sorry for the late answer. We had to help family members in ditches, from the ice storm. Kind of like running back into the burning building. lol... I did have the R CHOP and that was followed by the Zevalin but I don't think any of them are too much fun. And yes I think we're all probably much more aware of how we feel. I'm glad I'm not alone! Hope the eye thing gets better or you can figure out what it is. Mary(FNHL-1-4A-(7/08)Remission

merrywinner

KC13167 said:

Weird body stuff and return to work....
The decision as to when to return to work is a difficult one to make. I was diagnosed in June'10; went into remission in October, following 6 rounds of R-CHOP. My short term disability runs out in December, I hope my company's long term will kick in at that time. My onc has me out of work until April, but says I can go back earlier if I feel up to it or even later than April, if I don't feel up to it.

Most days, I still need a nap. I have some physical limitations secondary to the damage that my largest tumor pressing into and eating away at my spine. My brain is far from where it "normally" was and this is the most disturbing part for me. Do I wait until my decision making skills and ability to do more than one task at a time returns or go back sooner than that? I am a general manager of a big box specialty retail store which is very physically and mentally challenging. I normally work 10 to 12 hour days in this salaried position. My other option is going back to work as a RN, a field I have been out of for around 9 years. The nursing may have less hours weekly, but otherwise be just as stressful. I don't feel like I am as mentally keen as I should be to return to either one of these positions.

If my employer's LTD kicks in then I must apply for SSDI as well.

Does anyone have any suggestions or any input from personal experiences that they'd like to share?

Thanks, Kellie (DLBC-4B-6/10)

Hi Kellie
Oh how I can sympathize with the return to work decision. I was faced with the same thing last June and probably returned a little too soon. I was at the point of being switched over to LTD after exhausting my FMLA for the year. With FMLA my current position was guaranteed but with LTD it is not. It has gone OK and at times it feels good to be back and productive and provides a change of scenery and a new point of view. But I don't have the stamina yet to make it a lot of days in a row. It is improving though. Is part time an option for you at least in the beginning? It seemed I could make it 2 days,then 3 now I can do 4 without collapsing. I am a nurse also and there is one stretch in my schedule where I work 6 out of 7 and I have trouble with that one. I do have to take days off more then I normally would because of fatigue but I was able to reup my FMLA in October. Maybe try to go back to what you are most familiar with at least in the beginning and also with the nursing thing I get exposed to way too much. I hope this helped some and best of luck to you. Mary (FNHL-1-4A-7/08)

merrywinner

forme said:

Wishful thinking
Hi John,
I am here too. I wish I was on vacation, but not in the cards.LOL I am trying to come to grips with my latest set back. I had a long talk on Fri night with PCP. He may want me to get an opinion at Mayo. I thought of M D Anderson, which is closer to Calif. But I am willing to go to the best for the right plan and help.
I am sorry that your still having trouble with your eyes. I have read that this is a common and long term issue resulting from chemo. I feel your frustration with wanting to be 100 %. Hang in there, it takes time and your so newly out of treatment..
I will be around today, as I plan on chillin at home.
Thinking of you..
Lisha

Hello Lisha
So sorry to read of all of your setbacks but it sounds like your PCP is really trying to help you sort it all out. I hope you can get a solid game plan in place soon. There are many great places to go but I only have personal experience with Mayo and maybe could lend some support if that is the choice. Take good care. Mary

merrywinner

allmost60 said:

I'm here...
Hi John,
I was thinking the same thing last night...kept going to the our group site and no-one had posted. I finally decided to go to the other discussion groups and look around and it was pretty interesting. The Colorectal Cancer board is "huge" and it took me a couple of hours to read all of their discussions. It's amazing how supportive each discussion group is with their fellow cancer friends...brought me to tears more than once. Anyways...this is my last "good" weekend..(chemo on Tuesday).. so I've been getting some things done. Got all of the outside Christmas lights and decorations ready to go for my oldest son to put up for me. Him and his girlfriend plan to do it next Friday. Charley will do the outside and me and Robyn will tackle the inside...well.. I'll do what I can with having the nasty "pred" surging through my body...UGH!!! My energy level "rallied" this last week..(just in time for round 5)...."sigh"!You said thats how it works, and you were right...(as always!) I felt so exhausted the first 15 days after round 4 and then "bam" woke up last week and felt great each day...sooo weird! Oh well...the countdown is on now for me...one more round after Tuesday and hopefully I'll be good to go for awhile. Makes me crazy when I go to that scary place..."when will I have to go through all of this again?" I try not to think about it, but the thought is always lurking in the back of my mind. I'm thinkin it will always be there, as long as a "CURE" is still not an option with this type of cancer. We can only pray a "cure" will come!
Take care...Sue (FNHL-2-3A-6/10)

Hi Sue
Good to see you. I remember that dilemma from when I was in treatment. I would just start to feel human and then... Wham! Time for another treatment and all that comes with that.I won't bring up the dreaded you know what!! At least the light at the end of the tunnel is visible and you have been a trooper. All the best. Mary(FNHL-1-4A-7/08)

merrywinner

dixiegirl said:

Busy
We brought Sam home Thursday evening and it's been a whirlwind of potty training and playtime around here John. Didn't even get a chance to turn on the computer yesterday.

Lots of errands, and of course you know how it is....puppy breath is addicting and just watching this little uncoordinated furball run is so funny. The silly dog has a very nice crate, a huge dogbed....where does he fall asleep? In the toy crate LOL.

Getting back to ourselves and finding our new normals takes time. Give yourself a few months.

Talk to you later.
Beth

Beth
Congrats on the new arrival. He is way to cute. Keeps you busy I'm sure but the payoff is so sweet. Take care, Mary

Newfoundcancer

COBRA666 said:

Aches and Pains
Donna,
No matter what simple ache and pain we have we always assume it is a lymphoma reaction. I know we all do that. I am probably the worse one for it. Your hand gets stiff or your knee gets an ache and you think "Oh my gosh its the lymphoma getting into my joints now".Sound about right? If your hand would have gotten stiff or your knee started to ache a few years ago you would have shrugged it off as a strain. You know it is perfectly normal to think that way now. Hey, we have all gone thru a lot of stuff with this disease. We don't really know the future and whats gonna happen. You know what else,
we never knew what the future would bring before we even got this disease,but we never gave it a second thought. Who does? We all get down once in a while when we think of the "What Ifs". I am hopeful they can keep us all in some sort of remission until they can find a cure. They will one day and the sooner the better. Take care and be talking to you. Have a great Thanksgiving. John(FNHL-1-4A-5/10)

Still here!
But feeling happy!

forme

merrywinner said:

Hello Lisha
So sorry to read of all of your setbacks but it sounds like your PCP is really trying to help you sort it all out. I hope you can get a solid game plan in place soon. There are many great places to go but I only have personal experience with Mayo and maybe could lend some support if that is the choice. Take good care. Mary

Thanks
Hi Mary,
Thank you , I hope to have a plan in place shortly. It does feel like I may need to go out of the area for more advice/treatment. I'll keeep you in my mind for the go to person, if I end up going to Mayo. Thanks again.
Peaceful healing
Lisha

KC13167

merrywinner said:

Hi Kellie
Oh how I can sympathize with the return to work decision. I was faced with the same thing last June and probably returned a little too soon. I was at the point of being switched over to LTD after exhausting my FMLA for the year. With FMLA my current position was guaranteed but with LTD it is not. It has gone OK and at times it feels good to be back and productive and provides a change of scenery and a new point of view. But I don't have the stamina yet to make it a lot of days in a row. It is improving though. Is part time an option for you at least in the beginning? It seemed I could make it 2 days,then 3 now I can do 4 without collapsing. I am a nurse also and there is one stretch in my schedule where I work 6 out of 7 and I have trouble with that one. I do have to take days off more then I normally would because of fatigue but I was able to reup my FMLA in October. Maybe try to go back to what you are most familiar with at least in the beginning and also with the nursing thing I get exposed to way too much. I hope this helped some and best of luck to you. Mary (FNHL-1-4A-7/08)

Work,, Mary
Thanks Mary,

Your post helps, thank you very much for your response. My FMLA is up in early January. I was told that I would have a position when I return, no matter how long I take off. But, without FMLA, I don't have anything to back it up except my the word of my district manager. I'm also afraid of being without health insurance or of having to pay 100% of my coverage. Are you a bedside nurse? Your schedule looks as if you work in a facility of some sort.