Tami Posted May 16, 2006 Posted May 16, 2006 I'm not sure where the appropriate place to post this would be so I just went with the general forum. Many of you know my history so I won't go into all that again. My original diagnosis was Stage IV inoperable but I was eventually "operable" and I've been good for 3 years now. I found the discussion of restaging interesting... I'm not sure if I was restaged or not. I addition to several surgeries I went through 2 protocols of chemo. 12 weeks Carboplatin and taxol (I think taxol.. it was a T word) and then when that didn't work 12 weeks of cisplatin with radiation. During that time I had the chemo effects but didn't complain about them much. One of the effects was with my memory but in the scheme of things it wasn't an issue because at that point they weren't giving me much hope to live. So I didn't care about my memory. I never went on disability because I was a sole provider and couldn't afford it. Unfortunately, my memory problems are getting worse. About a year and half ago I moved out of my position into one that was "supposed" to be easier and less stressful. I took a pay cut etc. I thought that I would be able to keep up better. I don't know if things are really worse (they seem to be though) or if the added stress of my home life is making things more obvious. I have almost no short term memory anymore. I have problems typing and writing with misspellings of simple words, I lose things and can't remember where I put them from minute to minute. I can't remember where I'm driving, forget which is left and which is right, I was just on the elevator and pushed the wrong button twice because I couldn't remember what floor I needed. I make lists and stuff but I can't keep up at work at all anymore. My work is extremely hectic now and very pressured that combined with no sleep at night and a very tense home life. Maybe it's just expounding the problem?? I plan to go to the doctor Friday to see what she thinks. I'm guess she will do a scan?? but I'm wondering if I should push for some neuro testing?? I don't really think it's getting worse (as in brain mets now) I just think I can't cover up the problem anymore?? I'm also wondering about alzheimers as that is in my family to a great extent. But I'm early 40's... isn't that too young? My other problem is what to do about it. I can't go on disability because even if they accepted me I can't go for months without income and the money is not enough to live on. I hate to keep dropping down job wise too because obviously my income keeps going down too. I know that you can work a little and still receive disability but I don't know how much?? Anyone have any thoughts? Could this still be chemo effects or does this sound like Brain met issues. I'd appreciate any thoughts... Quote
Donna G Posted May 16, 2006 Posted May 16, 2006 See the doctor as you plan. Perhaps stess from the diagnosis and treatment could be a leading contributor and of course worrying about it brings on more-stress. You are young , perhaps you need rehabilitation. Maybe you need daily exercise, a counsellor, and an antidepressent pill. I hope this is your problem because you can find help. Donna G Quote
Don M Posted May 16, 2006 Posted May 16, 2006 Hi Tami: yah, see the doctor. I suspect that stress is a very large factor. I would get an mri too. I hope it can easily be reversed with lexapro or something like that. It definitely looks like it has proceded beyond the cute or funny stage. If it is ssoemthing related to alzheimers, i think there is medication now that greatly mutes the symptoms and slows the progression. Don M Quote
Bill Posted May 16, 2006 Posted May 16, 2006 My other problem is what to do about it. I can't go on disability because even if they accepted me I can't go for months without income and the money is not enough to live on. I hate to keep dropping down job wise too because obviously my income keeps going down too. I know that you can work a little and still receive disability but I don't know how much?? /////////////// T : Some companies offer S/T disability coverage to bridge the gap. Usually ~ 6 months at ~ 60% of gross pay. Double check your benefits. RE: disability generally, a cancer dx, even stage 4, doesn't guarantee disability status. In my wife's case, every doc treating her considers her 100% disabled due to her cancer but technically, based on disability categories available, she doesn't qualify unless she isn't receiving chemo tx and is in hospice. We haven't pushed the issue because coverage is okay as is up till now, but eventually we will have to push it. Probably not the cancer route, unless she's in hospice, but seek disability status based on her disabling spine surgeries. In other words, she gets her disability via the neurosurgeon, not her med onc. So, if you have any other health conditions secondary to cancer , or unrelated, pursue that, as well. Good luck. B Quote
Littlegirl Posted May 16, 2006 Posted May 16, 2006 Tami - I think it is a good idea to see your doctor but please don't get too stressed about this before you are told you have a reason to be. You've had alot to deal with lately and I think it could just be the stress getting to you. I just turned 38 and lately have not felt as 'sharp' as I used to be. Forgetting things I never thought I would, going to store and forgetting what I needed, driving and briefly forget where I was headed as my mind is drifting somewhere else and so on, and basically just having problems keeping up with day to day life. Let me also add that it is my MOM that has cancer, not me, so I cannot blame it on chemo brain or fatique from radiation. I just think it is the new stresses brought on by my mom's condition added to my previous stessors. Hope your doctor can tell you this is nothing to worry about and help to get this under control for you. Karen P.S. For what its worth, I think your post sounded very clear and well written! Quote
Snowflake Posted May 16, 2006 Posted May 16, 2006 Tami, First and foremost, get a brain MRI to rule out critters in your head. Do I think you have critters? No, but I do think you need to get that thought out of your mind... Second, see if your doctor will refer you to a neuropsychologist for comprehensive testing. I had the same issues two years ago. In fact, it all came to a head at work - the phone rang and I couldn't remember how to answer it. I don't mean I couldn't remember what to say, I could not remember the steps involved with answering the damn phone! Other symptoms? *Turning left at a red light without even slowing down. Scared the hell out of my husband - the passenger. *"Losing" words. Trying to speak and not being able to think of a particular word. For example, if the word I lost was "dog", I would be able to visualize the animal and not spit out the word...VERY frustrating to someone who has a comeback for everything! LOL *Losing my train of thought mid-sentence. Could not figure out where I was going with what I was saying and nothing would put me back on track. I was more comfortable with writing because when I lost my train, I could follow the track... *Getting lost. Forgetting where I was going and heading the opposite direction, not knowing how to get back from where I was. I began stopping at all intersections at least three times because I was never sure if I had checked for traffic! (Yep, got flipped off a lot!) *Missing appointments, birthdays, deadlines, you name it. Time didn't stand still, but it didn't register correctly, either. *Forgetting what I was doing. Best example - getting up and heading into the kitchen, not knowing why I was there and sitting back down, looking up in a few minutes to see all the cupboard doors open and not knowing why someone (it was me) left them that way! I found that the more stress I had heaped on, the worse it got. My MRI showed I do/did have white matter damage. White matter will eventually regenerate, but it has to be retrained. There are exercises for that - I find Sudoku to be relaxing and challenging enough to keep my brain moving. I'm still not quite up to speed enough to really whip butt at Jeopardy!, but I'm working on it. It's a slow recovery, to say the least. I still have days where I get lost mid-thought, can't remember which way to turn to get somewhere or simply cannot multi-task at work. Work is one of the big stresses in my life, but like you, it isn't optional. I think a vacation would help - and cleaning house. I don't mean breaking out the Windex and 409, I'm thinking steel-toed boots and a good swift kick... Take care of you, get the first thing taken care of and then the rest is just "therapy"! xxoo, Becky Quote
eppie Posted May 17, 2006 Posted May 17, 2006 Again, Becky has the best words. Ritalin helps me and I never had cancer. Eppie Quote
pammie Posted May 17, 2006 Posted May 17, 2006 Yes, please go to the docs. They can do testing to see what fundamental problem might be. Stress can cause all of what you have listed. Worry and anxiety robs our minds. Bless your heart Tani. will be praying for you. pammie Quote
ztweb Posted May 17, 2006 Posted May 17, 2006 Tami, I am so sorry for this...this has to be daunting and frustrating. I know nothing, so can't be of any help in that regard, but I will put you into my prayers! God bless. Quote
mamasbabygirl Posted May 17, 2006 Posted May 17, 2006 Kind of sounds like anxiety to me. I had an MRI a few years ago bc of dizziness and confusion I was experiencing. I started taking Lexapro and it helped. I weaned myself off of the Lexapro last year and things are OK so far. I agree that you should have an MRI, but I also wouldn't get too worked up about it as your symptoms may worsen. Quote
Frank Lamb Posted May 17, 2006 Posted May 17, 2006 Tami,I think there was good advice in the above posts.Especially Beckys. Hope you have this remedied soon. Quote
Linda661 Posted May 17, 2006 Posted May 17, 2006 Sounds like you're getting good advice. I will be interested to see what happens with this thread as my mom is also exhibiting this stuff -- what Becky said is eerily familiar to what I have seen with my mom and it quite frankly bothers me to the point that I don't want her left alone (she's also been independently professionally assessed to need 24 hour supervision). I thought this stuff was temporary from chemo effects or out of whack electrolytes once a brain scan determines that there is nothing noteworthy causing it. Linda Quote
Connie B Posted May 17, 2006 Posted May 17, 2006 All the advice our friends have offered is right on the button! I just wanted to add I honestly can relate to what your going through, as I am going through a LOT of the same things. In my case it appears that all the surgeries I had can/will and may have added to my memory loss and as well as the chemo way back when, and it doesn't appear that my memory will get any better. It's very VERY frustrating and very hard on us. I wish I could just blame it on aging, but in my case to many other factors are in play as well. Oh yes, don't forget the HORMONE ISSUE TOO! That too adds to memory loss. I got thrown into my change of life 11 years ago during my chemo, and sadly enough I am STILL dealing with that in full force. (((((((((((((((TAMI))))))))))))) Quote
Tami Posted May 17, 2006 Author Posted May 17, 2006 Thanks everyone for all the replys. As much as I hate to do it I will talk with my PCP on Friday. Becky.. thanks for the symptoms. Several are very familiar. I wrote an e-mail to my sister the other day and mentioned a few things that you mentioned. The creepiest part is the right and left thing, the forgetting how to spell words (it takes me forever to write someone a note), the driving stuff (I've been through a few red lights) it's a very weird feeling. Connie.. my sister mentioned the menopause stuff.. I don't really want to THINK about that yet but I guess it's possible I'm hoping it's nothing although I also hope my PCP can give me something or some type of meds to help. Is there an "anti-stress" pill. My stress isn't going anywhere anytime soon but it will be a comfort in a way to know that this is just stress related. I'm hoping it's simply a combination of the stress on top of the old chemo effects and I just can't cover it anymore. I just need to find ways to deal with it I guess... the lists aren't working anymore. I'm hoping for an "empty head". I'll let ya know what she tells me. Thanks everyone! You guys are all so smart. Quote
luvmydog2 Posted May 18, 2006 Posted May 18, 2006 My other problem is what to do about it. I can't go on disability because even if they accepted me I can't go for months without income and the money is not enough to live on. I hate to keep dropping down job wise too because obviously my income keeps going down too. I know that you can work a little and still receive disability but I don't know how much?? http://ssa-custhelp.ssa.gov/cgi-bin/ssa ... 9362523&p_ sid=zuDH3cJh&p_lva=&p_sp=cF9zcm NoPTEmcF9zb3J0X2J5PSZwX2dya WRzb3J0PSZwX3Jvd19jbn Q9NDMmcF9wcm9kcz0mcF9j YXRzPSZwX3B2PSZwX2N2 PTEuMTA1JnBfcGFnZT0x&p_li=&p_topview=1 You can earn 860.00 per month and draw SSDI. Also if you can get short term disability from work, even at 60%, this is considered income and applied to the income. You can also earn this amount while applying for SSDI. Quote
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