How do you go bak to normal ??
My last day of chemo was New Years Day ...i know have nueropathy and extreme fatigue ..i applied for SSI and just found out i was denied . I lost all of my hair eyelashes and eyebrows ...which are all coming bak in now ..this was very devestating to me ..i still dont know the person lookin bak at me in the mirror. My hands and feet are numb everyday and my feet hurt most days to the point i tiptoe . I have no income coming in except 550 a month in child support ...and it seems in this "great country of ours" there is no help!!!!None ! I am sooo depressed and rarely leave my house....the horror strted when i was diagnosed and it seems to just keep gettin worse ....
Comments
-
Hi Mitzi,
I'm also 45 and
Hi Mitzi,
I'm also 45 and the mother of a 20 year old. I'm going to my second chemo treatment on Thursday, so I'm afraid I can't give you much advice about going back to normal. What I do know, is I don't think my "normal" will ever be the same as it was.
I do have a suggestion for your situation though, try contacting the Social Worker where you were getting your treatments and see if he/she can help you. I have heard from others on the board that an initial denial is often overturned when you resubmit your application.
You don't mention any additional treatments, so I assume you are NED? Congratulations if that's the case! That's one HUGE obstacle overcome!
My thoughts and prayers are with you!
HUGS
Leesa0 -
SSI DENIAL
Be sure to appeal your SSI denial within the 60-day period. If you do not yet have an attorney helping you with your claim, this might well be the time to find one to help with preparing and filing your appeal paperwork. Be sure to ask what the attorney fee would be and when it would need to be paid. In our area there is no fee until (unless) you win your claim. If your claim is ultimately not successful, you would only be billed the cost of obtaining medical records, etc. Be sure the attorney's office is aware of your appeal deadline.
Do your medical records document the ongoing neuropathy, etc? It is very important to keep your doctor informed of how you are doing. Even a telephone call with a detailed message should make it into your medical file.
Hang in there!
Sally0 -
Hi Mitzi
I am so sorry to hear of your misfortune...I can tell you that you are most certainly "not alone". Leesa is right about normalcy. I think you will never get back to what you refer to as normal. However, we tend to create a new normal as a way of being creatures of adaptation.
My story is somewhat similar to yours, except the big difference is that my Mom is the one who has the cancer. Mom's story is long but I will try to keep it short so you don't have to read a novel.
Mom was diagnosed in Jan. with stage IV ovarian cancer. She has 4 children, me included. Prior to my mother falling ill, she worked full time as a house mom for a non-profit organization that takes care of pregnant teens and young mothers with their babies. She lived in this house with these young adults. For reasons I do not understand, she opted not to take medical insurance. She has had several run ins with health issues(non cancer) in the past so I was shocked to hear that she chose not to have insurance. Now, almost 3 months later, she is still in the hospital with one complication after another, and still no insurance. She cannot walk very far without being exhausted, wears oxygen 24 hours a day, needs constant pain medication for pains in her abdomen, and has bouts of nausea/diarrhea. She needs round the clock care. Thank God that she has been in the hospital because some of her complications would have taken her life if she had been discharged earlier(several blood clots that traveled to the lungs).
Due to her illness, her job can no longer have her live there. They had to hire someone else to guard these young women. They have been great as far as giving her support and have even gone as far as still giving her a salary-which was never much to begin with but still a very thoughtful gesture.
My dilemma is that I have a constant guilt that I cannot take care of her. I live in a townhome with 3 different levels and work long hours. I cannot offer her the support that she needs. My siblings all have very similar situations to mine. We have gotten her charity care so that her medical bills will be taken care of for the next year as long as she is still affiliated with this particular hospital-but that does not take care of her future living arrangements. We have been trying to get her Medicaid since she's been in there but it's one obstacle after another. She is also young, 57 years old.
I visit her often even though it's not close to my home or job and I call constantly. I often break down on the phone with her about how I wish I could quit my job and take care of her. My husband has even thought of maybe renting/selling our home so that we can get a cheap two bedroom apartment so that I would not have to work and I can be a primary caregiver...but how can I do that to him when we've worked so hard to get this home?
I completely understand your whole situation and am saddened that you have to go through this. It angers me that this system has made life difficult for the people that really need help and seem to let others slide. There has to be a better way. I can promise you one thing. Now that I know your name, I will most certainly keep you posted if I find any more info out that might be helpful.
Please try to check your state's website to see if there are any other programs that you might qualify for-which I'm sure you've already done.
I will pray for you my new friend. You are never alone when you come to this website. Please keep us posted and visit often.
Hugs and prayers,
Allison0 -
Hi, Mitzi....
Most of us do not have Dysgerminoma (germ cell cancer). Your prognosis is excellent, and that may be the reason you were denied SS disability. Nevertheless, we understand how you feel.
The Neuropathy can be treated by a specialist (neurologist). If you have not consulted one, I hope you will consider doing so ASAP. The fatigue is puzzling, since your therapy concluded months ago. How is your blood work? When did you last have a CBC done?
I was also diagnosed in Sept of 09......I have stage IIIc ovarian cancer. I have completed my initial chemotherapy and have signed on for a year of Taxol maintenance. My hair won't be coming back anytime soon, but physically I feel pretty good. My numbers (blood counts) are climbing and I am really looking forward to Spring. All winter, I felt as bleak as the weather.
Carlene0 -
Hey Leesaleesag said:Hi Mitzi,
I'm also 45 and
Hi Mitzi,
I'm also 45 and the mother of a 20 year old. I'm going to my second chemo treatment on Thursday, so I'm afraid I can't give you much advice about going back to normal. What I do know, is I don't think my "normal" will ever be the same as it was.
I do have a suggestion for your situation though, try contacting the Social Worker where you were getting your treatments and see if he/she can help you. I have heard from others on the board that an initial denial is often overturned when you resubmit your application.
You don't mention any additional treatments, so I assume you are NED? Congratulations if that's the case! That's one HUGE obstacle overcome!
My thoughts and prayers are with you!
HUGS
Leesa
..my thoughts
Hey Leesa ..my thoughts and prayers are with you as you go thru your chemo. They were very hard for me ..i had to go to a Cancer Center 58 miles away and i went alone.
Thank you for responding to my post. Yes i am NED..they found the mass in my right ovary in Feb 09 .i also have a 24 yr old ( who hasnt been around since last Sept )well she was goin thru tough times and i kind of put it on the back burner . They did the blood test CA125 i believe its called ..the nurse at my OBGYN's office called and said Congrats you dont have ovarian cancer ..so i wasnt concerned ..it wasnt until Aug when i fell to my knees at work at a table ( im a waitress)from the pain that i knew something was wrong . That and the fact i looked 10 months pregnant.i had been in constant pain for months and was thinkin it was my gallbladder . i went back to my OB they did another inner vaginal ultrasound and the mass was the size of my hand now ..my OB came in handed me a tissue and said were sending you to Wilmington ..to the Zimmer Cancer Clinic...to make a long story short.. they found i also had 2 tumors in my left ovary .. when i went in for surgery it was initially for the removal of my right ovary and my uterus ..but they found the tumors in my left so they did a complete hysterectomy. While they were removing the cancer it ruptured ..hence the chemotherapy ..my first round started 2 weeks after my surgery .
My 16 yr old was in/out of a adolescent physchiatric (sp) hosp 4 times during my chemo..it was me and my 15 yr old son ..and my younger brother when he could .Its been a long road. Im ecstaic that i am cancer free ..but every other aspect of my life has been destroyed . After my chemo my mother started calling me again ..but i find it really hard to be nice to her ..i mean where were you when i needed you? I also have heart problems ..the chemo was giving me such chest pains ..the last day of my first round i was admitted to the hospital at 5 am so they could put a stent in my heart ..when they got in there they found it would do more harm than good at the time ..i was sent straight down to chemo after the procedure to go thru 5 and 1/2 hours of chemo ..i had no ride home that day and all of the people i had called "friends" had abandoned me .. i wound up getting a ride home from a man i waited on in the rest i had worked at . When i got home ..i was a mess..my mother called and said sorry i couldnt take you this morning it was soo early and preceded to tell me about her shopping trip that day ! i could go on and on ...this whole part of my life has been a nitemare and seems to keep getting worse ...
So i guess im done ..lol Thank you so much for your ear and everyone else that responded to me .. i appreciate it so much and am thankful to have others who have gone and are going thru the same things ....0 -
Hey Sallykansasgal said:SSI DENIAL
Be sure to appeal your SSI denial within the 60-day period. If you do not yet have an attorney helping you with your claim, this might well be the time to find one to help with preparing and filing your appeal paperwork. Be sure to ask what the attorney fee would be and when it would need to be paid. In our area there is no fee until (unless) you win your claim. If your claim is ultimately not successful, you would only be billed the cost of obtaining medical records, etc. Be sure the attorney's office is aware of your appeal deadline.
Do your medical records document the ongoing neuropathy, etc? It is very important to keep your doctor informed of how you are doing. Even a telephone call with a detailed message should make it into your medical file.
Hang in there!
Sally I have gotten
Hey Sally I have gotten a atty . Im not sure if the nueropathy was included in my initial filing ..i know it will be now . Thank you so much for responding ..it means so much ..
Mitzi0 -
Hey Allisonminky1225 said:Hi Mitzi
I am so sorry to hear of your misfortune...I can tell you that you are most certainly "not alone". Leesa is right about normalcy. I think you will never get back to what you refer to as normal. However, we tend to create a new normal as a way of being creatures of adaptation.
My story is somewhat similar to yours, except the big difference is that my Mom is the one who has the cancer. Mom's story is long but I will try to keep it short so you don't have to read a novel.
Mom was diagnosed in Jan. with stage IV ovarian cancer. She has 4 children, me included. Prior to my mother falling ill, she worked full time as a house mom for a non-profit organization that takes care of pregnant teens and young mothers with their babies. She lived in this house with these young adults. For reasons I do not understand, she opted not to take medical insurance. She has had several run ins with health issues(non cancer) in the past so I was shocked to hear that she chose not to have insurance. Now, almost 3 months later, she is still in the hospital with one complication after another, and still no insurance. She cannot walk very far without being exhausted, wears oxygen 24 hours a day, needs constant pain medication for pains in her abdomen, and has bouts of nausea/diarrhea. She needs round the clock care. Thank God that she has been in the hospital because some of her complications would have taken her life if she had been discharged earlier(several blood clots that traveled to the lungs).
Due to her illness, her job can no longer have her live there. They had to hire someone else to guard these young women. They have been great as far as giving her support and have even gone as far as still giving her a salary-which was never much to begin with but still a very thoughtful gesture.
My dilemma is that I have a constant guilt that I cannot take care of her. I live in a townhome with 3 different levels and work long hours. I cannot offer her the support that she needs. My siblings all have very similar situations to mine. We have gotten her charity care so that her medical bills will be taken care of for the next year as long as she is still affiliated with this particular hospital-but that does not take care of her future living arrangements. We have been trying to get her Medicaid since she's been in there but it's one obstacle after another. She is also young, 57 years old.
I visit her often even though it's not close to my home or job and I call constantly. I often break down on the phone with her about how I wish I could quit my job and take care of her. My husband has even thought of maybe renting/selling our home so that we can get a cheap two bedroom apartment so that I would not have to work and I can be a primary caregiver...but how can I do that to him when we've worked so hard to get this home?
I completely understand your whole situation and am saddened that you have to go through this. It angers me that this system has made life difficult for the people that really need help and seem to let others slide. There has to be a better way. I can promise you one thing. Now that I know your name, I will most certainly keep you posted if I find any more info out that might be helpful.
Please try to check your state's website to see if there are any other programs that you might qualify for-which I'm sure you've already done.
I will pray for you my new friend. You are never alone when you come to this website. Please keep us posted and visit often.
Hugs and prayers,
Allison I am so sorry
Hey Allison I am so sorry to hear about your Mother ..i know you have to be struggling with alot .I coudlnt even imagine .Yes the system is completely messed up . Ive worked with girls whose child gets SSI for having Fetal Alcohol Syndrome ..that the mother caused obviously and she spends it on herself !Now with the new health insurance laws ..who knows where we'll be ...
Thank you for responding ..i can offer you a ear and a shoulder to lean on if you ever are in the need for them ...i am so glad i found this website ..it truly makes me happy .
You and your family are in my prayers !
Mitzi0 -
Hey CarleneHissy_Fitz said:Hi, Mitzi....
Most of us do not have Dysgerminoma (germ cell cancer). Your prognosis is excellent, and that may be the reason you were denied SS disability. Nevertheless, we understand how you feel.
The Neuropathy can be treated by a specialist (neurologist). If you have not consulted one, I hope you will consider doing so ASAP. The fatigue is puzzling, since your therapy concluded months ago. How is your blood work? When did you last have a CBC done?
I was also diagnosed in Sept of 09......I have stage IIIc ovarian cancer. I have completed my initial chemotherapy and have signed on for a year of Taxol maintenance. My hair won't be coming back anytime soon, but physically I feel pretty good. My numbers (blood counts) are climbing and I am really looking forward to Spring. All winter, I felt as bleak as the weather.
Carlene Thank you for
Hey Carlene Thank you for responding it truly means alot ...
with your cancer did they do a hysterectomy? Mine was 1b..still contained to my ovaries ..and i ahd a complete hysterectomy. I dont know alot about the different stages and things ..im not sure i even asked enoughh ?'s ..
I have went to my nuerologist ..i have a fusion at C7 and right b4 they found my cancer they found my L4 and L5 were messed up .. she put me on Lyrica...the cancer Center had given me Nuerontin but i had terrible side effects from it and had to stop taking it . My fatigue ..for the most part is probably due to my depression .All of my blood test came perfectly normal .
My hair is probably a inch long now ..i cant stand wearing the wig ..i get so hot..im sure im goin thru menopause..due to the hysterectomy ..Im glad you are feeling good physically ..that makes it a little easier when you feel good =)The winter was very bleak for me also ..but yes Spring is here and lest hope it brings good things for all
I live on the coast of NC so we have ok weather yr round ...but its been beautiful.
If i can ask ..why are you having to do maintenance after your initial chemo ?
Like i said i probably need to read up on things more ..
Mitzi0 -
Normal
Mitzi...I am so sorry to hear of your plight. I can tell you this. I am 5 1/2 years out. I had every possible complication you can have short of death. I had all of your symptoms for a very very long time but I know I was far sicker with my treatment. The neuropathy in my hands and feet are for the most part gone. How you feel right now is your body recovering from a very serious treatment that kills cells good and bad. I wreaks havoc that you will still be feeling for a couple of years. Do not despair. It goes away little by little. It is important now for you to get out all the stuff that is lingering in your cells. Drink lots of water. Get lots of exercise. Talk to people that are on the other side of the treatment and ask them what they are doing. I know life for you is hard but as soon as you feel better you will automatically start doing better. Prayers for you and shame on your family. One thing I highly recommend is to focus on wellness and not sickness.0 -
I am doing maintenance chemoMitziDawn said:Hey Carlene
Thank you for
Hey Carlene Thank you for responding it truly means alot ...
with your cancer did they do a hysterectomy? Mine was 1b..still contained to my ovaries ..and i ahd a complete hysterectomy. I dont know alot about the different stages and things ..im not sure i even asked enoughh ?'s ..
I have went to my nuerologist ..i have a fusion at C7 and right b4 they found my cancer they found my L4 and L5 were messed up .. she put me on Lyrica...the cancer Center had given me Nuerontin but i had terrible side effects from it and had to stop taking it . My fatigue ..for the most part is probably due to my depression .All of my blood test came perfectly normal .
My hair is probably a inch long now ..i cant stand wearing the wig ..i get so hot..im sure im goin thru menopause..due to the hysterectomy ..Im glad you are feeling good physically ..that makes it a little easier when you feel good =)The winter was very bleak for me also ..but yes Spring is here and lest hope it brings good things for all
I live on the coast of NC so we have ok weather yr round ...but its been beautiful.
If i can ask ..why are you having to do maintenance after your initial chemo ?
Like i said i probably need to read up on things more ..
Mitzi
I am doing maintenance chemo because OVCA is very persistent and almost always comes back (unlike germ cell cancers). My doctor hopes the maintenance therapy will push back a possible recurrence.
I had back surgery in 2002 - fused from L4 to S1. I have degenerative disk disease. I don't take any meds for it, however, other than the occasional Tramadol for pain.
How bad is your neuropathy? Did the neuro guy say if it was permanent or not? Many times, it goes away eventually, on its own.
Have you seen anyone for the depression? I really think you should. Mental health is very important to cancer patients.
Carlene0 -
I can fully understand whatMitziDawn said:Hey Carlene
Thank you for
Hey Carlene Thank you for responding it truly means alot ...
with your cancer did they do a hysterectomy? Mine was 1b..still contained to my ovaries ..and i ahd a complete hysterectomy. I dont know alot about the different stages and things ..im not sure i even asked enoughh ?'s ..
I have went to my nuerologist ..i have a fusion at C7 and right b4 they found my cancer they found my L4 and L5 were messed up .. she put me on Lyrica...the cancer Center had given me Nuerontin but i had terrible side effects from it and had to stop taking it . My fatigue ..for the most part is probably due to my depression .All of my blood test came perfectly normal .
My hair is probably a inch long now ..i cant stand wearing the wig ..i get so hot..im sure im goin thru menopause..due to the hysterectomy ..Im glad you are feeling good physically ..that makes it a little easier when you feel good =)The winter was very bleak for me also ..but yes Spring is here and lest hope it brings good things for all
I live on the coast of NC so we have ok weather yr round ...but its been beautiful.
If i can ask ..why are you having to do maintenance after your initial chemo ?
Like i said i probably need to read up on things more ..
Mitzi
I can fully understand what you have written. I had surgery in July 2009 and 6 rounds of chemo which I finished in Dec 2009 for ovarian cancer stage 1 a/b--I am 43 with a 5 year old little boy. I too have really numb feet--not my hands so much. I also am having fatigue and bone aches--I have been told that these will go away in time--but not soon enough for me. I also can't stand the wig anymore--weather is getting warmer which only makes me hot with the wig--then I get cold. I just feel like when is this all going to stop!! I know everyone tells you that we should be so thankful--which I am--but I want to feel better too. Hope you start feeling better soon. My thoughts and prayers are with you. I am always here to listen.
Kathy0 -
SSDI
Mitzi......
This is info from an attorney who represents people trying to get SSDI. Hope it helps....you may have to file under the neuropathy.
A malignant primary or recurrent tumor of the ovaries qualifies for Social Security disability benefits if it meets one of the following criteria:
Ascites with demonstrated malignant cells, or
Unresectable infiltration, or
Unresectable metastases to omentum or elsewhere in the peritoneal cavity, or
Distant metastases
Carlene0 -
Neuropathy-bone aches--Hissy_Fitz said:SSDI
Mitzi......
This is info from an attorney who represents people trying to get SSDI. Hope it helps....you may have to file under the neuropathy.
A malignant primary or recurrent tumor of the ovaries qualifies for Social Security disability benefits if it meets one of the following criteria:
Ascites with demonstrated malignant cells, or
Unresectable infiltration, or
Unresectable metastases to omentum or elsewhere in the peritoneal cavity, or
Distant metastases
Carlene
Hey Guys...
this is my first post and I was diagnosed with stage 3 ovarian cancer March 2008, My last chemo was dec 31, 2008. My neuropathy went away after a year and so did the bone and muscle aches---but ladies the trick is physical therapy---It was unbelievable that only 3 session made the world of difference my body physically found its " normal" again. Also I am on SSI--I had a 5 month waiting period but got it due to the fact that cancer, any type of cancer is an incurable disease-(there is no cure for cancer) this is what I was told at the social security office and they gave it to me, I had to provide Dr info and that was it.
As far as not knowing the person in the mirror (getting back to normal) I feel the same but my looks aren't me and I have also put on 45 lbs due to steroids. My new motto is "IT IS WHAT IT IS" I am still beautiful on the inside I am 46 years old and have come to the conclusion that life is WAY to short to worry about my looks--I had depression bad--My husband wasn't there for me (going thru divorce)he was more worried about insurance policys than me. It is time to- go positive - think strong- As My friends tell me "put on your big girl panties" and see yourself from the inside. On january 13, 2010 my gullbladder came out and they found more cancer--so here I come chemo again--im strong and will fight and know that my side affects will go away when Im done with chemo I had one good year cancer free--Im living my life to the fullest-STRESS FREE FOR ME--thats my new motto now---Good luck to all of you out there and thanks for letting me tell my story.
Payers go out to all--Teal is real Fight the big OC.1 -
hikatvan said:Neuropathy-bone aches--
Hey Guys...
this is my first post and I was diagnosed with stage 3 ovarian cancer March 2008, My last chemo was dec 31, 2008. My neuropathy went away after a year and so did the bone and muscle aches---but ladies the trick is physical therapy---It was unbelievable that only 3 session made the world of difference my body physically found its " normal" again. Also I am on SSI--I had a 5 month waiting period but got it due to the fact that cancer, any type of cancer is an incurable disease-(there is no cure for cancer) this is what I was told at the social security office and they gave it to me, I had to provide Dr info and that was it.
As far as not knowing the person in the mirror (getting back to normal) I feel the same but my looks aren't me and I have also put on 45 lbs due to steroids. My new motto is "IT IS WHAT IT IS" I am still beautiful on the inside I am 46 years old and have come to the conclusion that life is WAY to short to worry about my looks--I had depression bad--My husband wasn't there for me (going thru divorce)he was more worried about insurance policys than me. It is time to- go positive - think strong- As My friends tell me "put on your big girl panties" and see yourself from the inside. On january 13, 2010 my gullbladder came out and they found more cancer--so here I come chemo again--im strong and will fight and know that my side affects will go away when Im done with chemo I had one good year cancer free--Im living my life to the fullest-STRESS FREE FOR ME--thats my new motto now---Good luck to all of you out there and thanks for letting me tell my story.
Payers go out to all--Teal is real Fight the big OC.
Hi Katvan
I will be 43 in May. Diagnosed Sept. 08, stage IV. Finished treatment April 09. Confirmed recurrence Dec. 09. New treatment started Jan. 10.
Good luck to you too.0
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