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Where is Everybody???

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Where is everybody? I have not seen a post in 2 days. Did everyone go on vacation Without me.hahahaha. John

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

Good morning John. How are you? I am here by default. I was supposed to work but we have had an ice storm overnight so I stayed right here. I have a 35 mile commute to work and that's way to much "white knuckle" for me. I'll be damned if I'm going to battle the big C only to kill myself on pure ice roads. So a free day for me!!! Mary

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Mary,
I thought something was wrong with the site or else my puter. Not used to seeing no posts for 2 days. There is usually 5-10 post a day. Its supposed to be in the 60's today where I live in NC . I have seen my share of ice storms when I lived in MD. and I can do without them. John

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

All is well. I did see a few new posts from yesterday and Friday. You might try refreshing your site. I have to do that from time to time to see all the current stuff. I notice you seem gone sometimes when folks are posting and now I know why. Dang to the ice storms.....unfortunately I have to live with them. How are you feeling? I got my appointment papers to go back to Mayo Clinic in the mail yesterday, at the end of January. It was odd but just getting them made me feel so sad. It was an odd reaction but I guess it just brought everything back to the front burners. I will deal. Mary

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Mary,
I did press the refresh button on the puter,but nothing new comes up??? I feel pretty good. Its just I can not get back to 100%. That does worry me. I am now 2 months out from last treatment. My body does not feel all that tired,but my eyes feel tired. Don't understand it. I can understand how you feel about going back for your appt. It makes all kinds of thing go thru your mind. Other than that how are you feeling? John

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

Be easy on yourself John. At 8 weeks post treatment you won't be at 100% yet and the drugs are most likely just clearing. I was told 6-8 weeks of the medications still working. It takes awhile and it is gradual. You will see what I mean in the upcoming months. The eye thing I'm not sure about. You said they feel tired. How so? Tired as in dry or sore or heavy like it takes effort to keep them open? I am feeling good but get caught up in every little twinge my body has. I don't want to be all freaky and worry over every little thing but I think it's part of the process. I get spells of feeling weak and tired much like when I was in treatment but not as strong and they are getting further and further apart. They don't last long and serve as a reminder of sorts. Mary

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

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)

truckingalong
Posts: 444
Joined: Aug 2010

Hi, there,

I know what you mean. I get icked thinking that I would go back to work once my treatments would be done - probably by end of January - will have PET and CAT scans on Dec. 6th - but wait - my body would be running on left over chemo!! Yes, my mind would wander off then try to come back to refocus on tasks. For myself, I struggle with sleep. I could not get a full night sleep because my body is so busy dealing with what is going on. I starve for just at least 6 hours of straight sleep. But the good news is that my hubby and I just bought 3 in. memory foam mattress because I realize my body is too bony for that bed and so last night, I used it for the first time. I finally got to sleep a bit more so hopefully that will help me continue to sleep better. Still, all kinds of chemo surely wrecks our body systems including the ABVD cocktail for my type!

All my best,
Liz
(HL-4B-8/2010)

KC13167's picture
KC13167
Posts: 215
Joined: Jun 2010

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)

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

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)

KC13167's picture
KC13167
Posts: 215
Joined: Jun 2010

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.

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

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

forme's picture
forme
Posts: 1161
Joined: Aug 2010

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

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Lisha,
It seems we all have some sort of problem or setback with the treatments. Some are small and some not. Don't know what it is. I watch TV and its no problem, but as soon as I go outside in the light my eyes get heavy. Even in the house if there is a lot of light. You would be better off going to the best for any opinions. I don't really have that option where I live. There is always Duke University, but I had a bad experience with them once with a cataract evaluation. The Dr. dialated my eyes and then tried to give me a field vision test. You know yourself that when your eyes are dialated your vision is blurry. The local optomalogist could not believe they did that. My optomalogist would not say too much. They won't when it comes to another Dr. Anyway keep us posted with what all is going on. I am on here everyday and read all the posts. Thats why I was wondering where everybody was. John (FNHL-1-4A-5/10)
BTW- I haven't heard from Sue, I hope shes not trying to clean windows again hahahaha

forme's picture
forme
Posts: 1161
Joined: Aug 2010

Hi John,
I don't know if you have already found this web site, but it is full of really helpful info.
The site is called "Chemocare.com" Go to the site, then click on Managing side effects, then click, eye problems and/or dry eye syndrome. There is a lot of hrlpful insight into eye issues after chemo. The info sounds a lot like what you are going through.
You may already know of this site, but wanted to share in case you didn't.
Thinking of you and hoping your eye issues ease up.
peaceful healing
Lisha

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

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

forme's picture
forme
Posts: 1161
Joined: Aug 2010

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

allmost60's picture
allmost60
Posts: 3180
Joined: Jul 2010

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)

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

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

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Beth,
I know the feeling of a new puppy. That fresh breath smells so sweet. They run like crazy and all of a sudden they drop like a ton of bricks,totally exhausted. They are really like little kids in so many ways. I remember getting a bunch of toys for the kids at Xmas and they would take the toys out of the box and be playing the rest of the day in the boxes. Sometimes they even fell asleep in them.hahahaha!! Take care of that puppy and I know you will. John(FNHL-1-4A-5/10)

allmost60's picture
allmost60
Posts: 3180
Joined: Jul 2010

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's picture
merrywinner
Posts: 620
Joined: Aug 2009

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

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Sue,
I know exactly what you mean about feeling dragged out. Yep, you are following the same steps as I did with Mary. The last one was a real bite. I was dragging all the way to the clinic. There may have been a day or so That I felt a little surge of enery,but it wasn't much. It always stays in the back of our minds about this stuff returning. It may take months or years. Then again it may never return, but knowing it can is what makes us worry. I guess I am trying to rush things with feeling 100%,but it can't come fast enough for me.The eye drops really took the burn and scratchiness out,but they still feel heavy. My oldest son is coming for Thanksgiving(the one with Katie and who worked with me to build the cobra). He's got a 32 Ford he's working on now. Been buying motor parts to rebuild that much anyway. The youngest son is working in Pa. and can not get off. I will be thinking of you on Tuesday. I was actually thinking of you a few days ago know you were going in this week. I know you and Pred. do not get along so be good to yourself. I will keep in touch. John(FNHL-1-4A-5/10)

allmost60's picture
allmost60
Posts: 3180
Joined: Jul 2010

Hey John,
We will be with both of our sons and 2 grandchildren on Thanksgiving. They keep changing the plans....first Josh's house, then Charley's, and now they want to cook everything and bring it here to eat. Doesn't matter to me one way or the other...we have the most room...family room with a 42" plasma and 60" in the main living room..so I know "why" they want to come here...ha! Mama might have been born at night, but not "last night"..ha! Enjoy your time with the kids...we sure do! Love...Sue (FNHL-2-3A-6/10)

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

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)

tcvine's picture
tcvine
Posts: 174
Joined: Aug 2010

Hi Y'All,

I guess that several of us took a break for a day or so.

John, bless you, I pray for your FULL 100% recuperation!

Sue, good luck this week with your preds. What day was your infusion? How many days are you on pred? I truly pray that you will have a good Thanksgiving.

In fact, my best wishes to ALL for a great Thanksgiving this week!

As for me, I've had better weeks. Nothing in particular, just attitude, I think. Its just starting out to be a sh#%&*ty week. Anyway, my 6th and final infusion will be this Wednesday, the day before Thanksgiving. I have everything to be thankful for, including the final infusion. Hopefully, by then, I will actually feel grateful.

I went upstairs and did some exercise a little while ago. Only because my doc really chewed me out last week for not exercising, so I did. Sucked.

Honestly, I think this is not the best time for me to be blogging.

My best to everyone.
Tom (DLBCL-4-7/10)

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Tom,
That chemo is nasty thats for sure. Don't matter which one you get either. It does make you feel like crap. You start to feel pretty good and "BAM" you feel bad again. Thank goodness this is your last one coming up. I know you can't wait. I know I couldn't. Yea, everybody took a break all at once. I jumped on here and saw no posts. I was wondering if my puter went haywire or maybe the site was having problems. I see from all the replies everything is back to normal out there. You have a great Thankgiving week as well. John(FNHL-1-4A-5/10)

allmost60's picture
allmost60
Posts: 3180
Joined: Jul 2010

Hi Tom,
I go in on Tuesday morning for round 5. I have to take the pred Tuesday through Saturday...5 awful days..ha! My last round is on Dec.14th. Sounds like you are getting weary with this whole cancer routine...well...me too buddy. Irritates the crap out of me when I have to for-go doing all of things I use to do. Now especially...love decorating for Christmas and was always the one to climb on the roof to hang lights. No way no how this year. Hang in there Tom...your last round is Wednesday and then you get to rest!
Love...Sue (FNHL-2-3A-6/10)

onlytoday's picture
onlytoday
Posts: 598
Joined: Jun 2010

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

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

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)

Newfoundcancer
Posts: 40
Joined: Jun 2010

But feeling happy!

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