Tami
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Posts posted by Tami
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Thanks for all the info about staging. It seems to be a difficult process for some of us.. Like I mentioned only a couple attorneys in town even handle the cases and those that do won't talk to me while I'm working. I would have to stop work.. unfortunatly I have no short term disability. so no work = no pay and this could go on for a year?? I should have applied when I was diagnosed the stage 4 but couldn't I had to work. Now things see getting worse. Why is that? I've always had problems with neuropathy but now my left hand is becoming almost completely numb, sort of. Other times the top of it burns and when I wash my hands or put clothes on and something rubs across it.. it's a terrible burning. The area seems to be getting larger. Why is it getting worse. I thought the chemo effects would peak and then the damage was done. I haven't had chemo since about 2002. I had cistoplatin, carboplatin and taxol. I can't seem to type anymore. As I mentioned the lymphedma is worse in my arm and it aches alot. Keeps me up at night. Along with numbness and pain in the back and ribs. I guess what is bothering me is why it is getting worse? I work in an office so I sit at a computer and type. I'm having problems and pain from sitting and now I can't seem to type or hold a pen or pencil.
this is all so frustrating. I get bitter because of the way the doctors screwed up my case and gave me the wrong treatment and yet I'm grateful to be NED and don't want to rock the boat. I'm just not sure where to go from here.
Thanks for listening to me whine..
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Thanks Andrea and Kasey.. wow, you gals on quick on that keyboard.
Things with me are difficult at the moment at home. I'm still NED but the effects of all the treaments, surgery and depression are getting to me I think. I'm having some physical issues related to all that and I'm working ALOT trying to cover expenses. Which isn't helping things. the lympedema and neuropathy are worse this summer. Along with the rib pain.. Plus working 2 and 3 jobs doesn't help.
The reason I'm asking about staging is because I wanted to check on disability. As I said I was orginally diagnosed as a Stage 4 and I thought that meant automatic acceptance. However, I think they restaged me to a 1 or 2 because they did the surgery and changed their opinion of my tumor type etc. I can't even get an attorney to talk to me about it because I'm still working and I'm not undergoing treatment at this time. But I can't afford to just stop working. I guess I was hoping that this could be my "foot in the door" to get them to do something. There is a big difference between a stage 4 NED and a Stage 1 or 2. it's weird though you don't want to wish yourself sick...
Thanks for all your help!!!
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I THINK I read somewhere that staging never changes.. once you are given a stage that is what you remain. Is that correct?
I was listed as a stage 4 originally and was "inoperable" by my surgeon/oncologist. then I had surgery and have been okay since and in my mind I thought I was considered a stage 4 NED. However, in some recent paperwork I notice that they restaged me to a Stage 1 or 2 with NED.
Do they always do that? I thought that staging always remainded the same. Can someone share some wisdom with me!!!
Thanks.
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I like the lottery idea..!!
Kelly.. you can get it one day I'll take it the next. But it has to be one of those big payout ones. If I'm going to do this I'm gonna make it worth it. I've always dreamed of winning the lottery!
ever here that old lottery joke??
An old man lived a very frugal life. He worked very hard and prayed every night. Each night he would pray "oh God, I've lived a rightous life please bless me by allowing me to win the lottery." this went on every single night. "I didn't win today God but tomorrow please let me win the lottery".
The man lived a long life and eventually died. When at last he was in heaven he asked St Peter if he could speak with God. When he saw God he said "I was a good man on earth. All I ever asked was just to be able to win the lottery. I prayed every night that you would let me win. Why didn't you ever let me win the lottery"
and God said.. "why didn't you ever buy a ticket?"
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I had them both. Carbo and Taxol the first round and later I had Cisplatin along with my radiation.
I agree the Cisplatin was much more difficult to tolerate for me. I was much more tired, the nausea, the neuropathy in the fingers and toes was more pronounced and I just felt crappy... crappier I guess.
The "infusionist" told me that it is harder on your body especially your kidneys so I don't think they use it as a first line.. I think they are more likely to use the less harsh drugs like Carbo.
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I work for a large university. We are allowed to donate days to people that need them thoughout our own college. There are several colleges (education, health and human development, business etc) with hundreds of employees in each college.
In order for a person to be eligible to receive donated time they first must have used all their own sick time, vacation etc. Then it must be a serious illness (as deemed by the colleges Human resourses person) pregnancy etc. doesn't count. If the person qualifies a notice is sent to all employees with information about the employee just basic information about the illness etc. Asking people to donate. An individual may ONLY donate one VACATION DAY per month. The vacation day is taken from your bank of earned days. that's it you are not required to also make up the day. You just have one less vacation day to use.
That company sounds very unethical... that's like the company getting 2 days?? Sounds like they are exploting the ill person and taking advantage of their other employees. What a horrible system. If I were the person asking for donated days I would feel doubly guilty...
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I normally plan for the big stuff. But I once bought a house on the spur of the moment.
My first husband and I were considering moving and had discussed it. I was visiting my father in my hometown (which was about 40 minutes from my current home but in the same school district) and walked by a house that the owner was just putting a FSBO sign in the yard. I asked him if I could see the inside and he showed it to me and I said I'll take it!
I gave him $1,000.00 to hold it for me. Then I went and called my husband and said.. you'll never guess what I bought!" We ended up selling our current house fairly quickly and moved in. Neither he nor my kids ever saw the inside till the day we moved.
God, I loved that house, I still miss it.
Wonder if that's why we ended up getting divorced??
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This is tough and I'm at work.. supposed to be actualy working.. geez.
so far..
2. How about Mt. Rushmore.. it's got to be eroding..
4. strawberry
6. came up with the same as Eppie
7. coma, semicolon, colon, period, question mark, exclamation point, hyphen, quotes
8. cantalope
9. sox, shoes, sandels, skates, stirups?, skis
going to keep working on the rest..
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Just wanted to send out my prayers for Nancy B as she has her surgery today.
I'm hoping that the surgery goes well and that the doctors will remove the lung and with it all traces of that nasty tumor
May she awake from surgery knowing that she is free of the tumor and this da*n disease for GOOD!!!
Nancy... please post when you are feeling up to it!
Tami
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A Rhino for me... yuck! They always seemed kinda mean... I'm not mean
27% of people will be a "higher" life form than me! I thought I was a good person.. I think it was that $2.00 question?? Really wasn't sure about that one!
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Nancy,
Yes, the third time is the charm. I went through a couple of thorocotomys (mine was impossible to biopsy too due to location and they also operated on me twice to try and remove the tumor) and finally the pneumonectomy (left side). Honestly it wasn't that bad. It's the same type of incision although mine was a little longer but I didn't have to have a drainage tube with the pneumonectomy (I hated that tube) so it was easier to move around etc. I went back to work a little over a week after my surgery. I think you'll be able to attend your race in August. You can do anything you set your mind to!
Remember to use your breathing thing.. Hold a pillow on the incision while you move around. Walk and try to straighten up while you walk whenever you can. You can do this!!
I will be praying for your safe surgery and "easy" recovery. I'm hoping that this surgery will take care of things for you and you will never have to go through this again!
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Like the others my heart just breaks for you.
I pray that God will hold you close, comfort you and give you peace. You and Keith have been given such a wonderful love for the two of you to share. Now I pray that in addition to that love you will also find strength.
May Keith find relief from his pain. I am so sorry..
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I was worried that this might get lost in that long post.
Please let us know how things go when you contact Cedars-Sinai about the trial that meredith spoke of. I clicked on the link that she included and it does look very promising. I wish you could have found them sooner but at least you have them now!!!!
I am praying that this will give both you and Keith some options, some available treatment options and some hope. Keith is willing to fight... they must give him something to fight with.
Please let us know how things go. Many prayers for you both.
Tami
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Fly... no not like superman although that would be cool. I'm thinking a plane or even a hang glider.
However I am hoping that someday I'll get my wings!!
Tami
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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.
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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...
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Subject: Fw: What word starts with F and ends in K
A first-grade teacher, Ms. Brooks, was having trouble with one of her students.
The teacher asked, "Harry, what's your problem?"
Harry answered, "I'm too smart for the 1st grade. My
sister is in the 3rd grade and I'm smarter than she
is! I think I should be in the 3rd grade too!"
Ms. Brooks had had enough. She took Harry to the
principal's office. While Harry waited in the outer
office, the teacher explained to the principal what
the situation was.
The principal told Ms. Brooks he would give the boy
a test. If he failed to answer any of his questions he was to go back to the 1st grade and behave. She
agreed.
Harry was brought in and the conditions were explained
to him and he agreed to take the test.
Principal: "What is 3 x 3?"
Harry: "9".
Principal: "What is 6 x 6?"
Harry: "36".
And so it went with every question the principal
thought a 3rd grader should know.
The principal looks at Ms. Brooks and tells her, "I
think Harry can go to the 3rd grade."
Ms. Brooks says to the principal, "Let me ask him some
questions." The principal and Harry both agreed.
Ms. Brooks asks, "What does a cow have four of that I
have only two of?"
Harry, after a moment: "Legs."
Ms. Brooks: "What is in your pants
that you have but I
do not have?"
The principal wondered, why she would ask such a
question!
Harry replied: "Pockets."
Ms. Brooks: "What does a dog do that a man steps into?"
Harry: "Pants"
Ms. Brooks: What starts with a C, ends with a T, is
hairy, oval, delicious and contains thin, whitish
liquid?
Harry: "Coconut."
The principal sat forward with his mouth hanging open.
Ms. Brooks: "What goes in hard and pink then comes out
soft and sticky?"
The principal's eyes opened really wide and before he
could stop the answer.
Harry: "Bubble gum"
Ms. Brooks: "What does a man do standing up, a woman
does sitting down and a dog does on three legs?"
Harry: "Shake hands."
The principal was trembling.
Ms.Brooks: "What word starts with an 'F' and ends in
'K' that means a lot of heat and excitement?"
Harry: "Firetruck"
The principal breathed a sigh of relief and told the
teacher, "Put Harry in the fifth-grade, I got the lastseven questions wrong......!!!
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Good luck with your scan.
As everyone has said the scan part is painless and easy. I just get restless from trying to lay still for a long time.
The HARD part is the waiting after... For me the waiting is by far the most painful!! I had mine done the day after christmas and my doc called me on New Years day. The activity of the holiday helped keep my mind off things.
prayers for good results.
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Congrats Bill...
Who was your surgeon at Fox Chase? I went there to and my "inoperable tumor" was suddenly operable by Dr. Goldberg. He was great! Just wondering if he also helped you??
Congratulations again on the anniversary. What a wonderful way to celebrate! I wish you many, many more.
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I didn't even realize that you were a fellow PA person. No wonder you love those Steelers.
I'm also from PA... except I'm right in the middle of the state. Good ole PENN STATE country.
It was definately an interesting weekend here in PA. From the rain on Sat to the beautiful Sun on Sunday. The green is all around us. I'm hoping for some sunshine this saturday. Heading up to Pitt for a pirates game. I can take a little cold but I can't handle sitting in the rain. I'm praying for blue skies!!
tami
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I'm so sorry to hear about your niece.
I know she has young children.. that was the hardest part for me when they discussed my options or lack there of. Hopefully this clinical trial will do the trick and like you said it never hurts to have another opinion.
I'm so sick of this disease... Life just seems to be getting more and more difficult.
I will be praying for her and the family.
Take care.
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moving for me too!
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okay... I'll try it too.
How much of this stuff do you have to take?? I drink the Green Zone (healthy stuff tastes like grass) everyday mixed with water. I can handle that stuff. I tried Aloe Vera juice... OMG that was the worst stuff I have ever tasted. I just couldn't get it down no matter how good it was supposed to be for you.
I'm hoping that I don't need to drink quite as much of this cider or that it has a better taste??
I remember my parents calling that "thing" in the bottle a "mother" too. Wonder where that word came from. I always thought that when it had that in it it was about ready to turn (ferment).
Could you keep us posted on your results?
Tami
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So happy for you both!!
continued prayers for the new chemo!
Tammy
question about stage
in GENERAL
Posted
Thanks for all the information..
In a way this is all too funny.. I guess I should have filed when I received my Stage 4 diagnosis and especially after my second surgery to remove my tumor when I was a Stage 4, considered inoperable and given 4-6 months.
I guess I'm out of luck that I didn't die. I guess I lived too long to qualify as ever being sick...