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Newbie with recurrence

MJ5's picture
MJ5
Posts: 14
Joined: Feb 2011

Hi all. It seems like most members on here have UPSC. I do not, I have endometrial adenocarcinoma, stage 4B. Currently receiving Taxol/Carbo chemotherapy, which is working for now.

I read someone's post on here and she said she was lonely & I started crying. (I can't find the post now). In spite of having a great support system, I realize I am lonely to connect with others who are grappling with this sort of dire prognosis. I did not feel this need to connect the first time I had this cancer (10 years ago).

Thanks for listening, and hope I get to know some of you better. I live in the Phoenix, AZ area.

M.J.

Sara Zipora's picture
Sara Zipora
Posts: 227
Joined: Sep 2010

Hi,

I am also Stage IVB ,Grade III of Adenocarcinoma, Undifferentiated mostly clear cell type. I was Dx and operated
July 2010, just finished four rounds carbo /taxol and two carbo/Doxil. Right now I am 'officially' in remission, on Megace, anti hormonal. Bloods, red and white low from chem, Ca125 down from 84 post op, to 6.4 now. Was ur first 'sighting' Uterine too? Funnily enough ;-( you sound like a success story for our level, compared to what I've read. I too feel blessed with family but so alone! You must feel so frightened, but take heart from List's wonderful ,'warriorettes', many of whom are on multiple 'go-rounds' and still fighting away, and living life to it's fullest. This is an awful disease but you 'meet' the most accomplished women!

I live in Israel.

Sara

MJ5's picture
MJ5
Posts: 14
Joined: Feb 2011

Hi, Sara, Thank you for your response. So you are in complete remission now? That's great. I only got a partial remission after 6 chemos, but we are trying 2 more rounds. I don't believe the cell type I have is clear cell. My CA 125 is not elevated and never was.

Yes, the original cancer I had was uterine. I had the surgery, staging, etc. 10 years ago at which time the cancer was stage 3C (it had gone almost thru the uterine wall & was in lymph nodes).

I am so glad you are in remission now. Yes, I intend to keep fighting as long as I can.
Blessings,
M.J.

Kaleena's picture
Kaleena
Posts: 1079
Joined: Nov 2009

Dear M.J.

When I first got diagnosed, I did feel so alone. I am married and have three lovely sons but I felt I didn't want to burden them with more than they could handle. The first week was the worst. I would get up in the middle of the night (the worst time) and think about it and have a full blown panic attack. I then would do what I call the "silent scream" which really made me feel better. It was then that I took a positive turn on the whole thing which turned everything around.

And it seems that every radio station I was listening to played some form of "sad" song that eventually it got to be funny. I would start to get that sad look on my face and my husband would look at me and then we would just laugh.

Take a positive approach to the whole thing. I even took piano lessons. There are so many people who have this and we are not alone.

I was diagnosed with endometrial adenecarcinoma in September of 2005, had staging surgery in October 2005 and last year had a surgery February 2010 for a recurrence. I was originally staged with Grade 2 Stage iiia. During my recent surgery, everything was clear except for one lymph node which had microscopic cells in that they removed.

Please don't feel lonely. Just think of ways you can help others.

So, I see you had your cancer for ten years. How did you handle follow ups and tests during that time? I think it is great being NED but also difficult. Its like you don't know what class you are in.

Ooops. Now I am rambling.

I hope you are feeling better and not lonely.

Kathy
(from Pennsylvania)

MJ5's picture
MJ5
Posts: 14
Joined: Feb 2011

Hi, Kathy, thanks for responding to my post. Where was your recurrence that they did surgery on you? How were you diagnosed the 2nd time? How did they find it? Was it just one tumor?

10 years ago, the standard followup for Endometrial cancer was just a pap and pelvic exam every 6 months, so I had been doing that. I believe the standard now is a PET scan after year 3? Year 1? (not sure). Gyn/oncologist had ordered a PET scan when I started having abdominal and back pain, but insurance refused to approve it, I think because after 10 years everyone kept saying I wasn't having a recurrence. Anyway, doc ordered CT scans, which came back clear. The recurrence was in my lungs, so it never showed up of course.

What is your followup protocol?

Yes, I had a lot of fear the first time i had cancer. With the recurrence, I don't have as much fear. Just feel a bit disconnected from everyone, except those with cancer. Not all the time, but just when I need to share my deepest feelings, I don't feel I can be totally authentic.

What is NED?

Well, you hang in there too, and I am glad to hear that you are clear.

M.J.

HellieC
Posts: 436
Joined: Nov 2010

I had hysterectomy for atypical hyperplasia in 2001 (no cancer found), was clear until 2008 when recurrence at vaginal vault detected (surprise - cancer recurred when no one had found it first time!), had pelvic radiotherapy, then clear for 2.5 years until July 2010, when 2nd recurrence found again at vaginal vault, pouch of douglas and wrapped around sigmoid colon. Had major surgery to debulk in Aug 2010 and just finished 6 rounds of carbo/taxol to try to zap the microscopic remains on bladder and peritoneum. Mine is "standard" adenocarcinoma (not UPSC). Heaven knows why it just won't give up and die - no one can understand it! First recurrence was Grade 1, second recurrence Grade 2. (This little sucker seems to get stronger and more resilient each time we try to zap it).
My emotions oscilate between absolute fear and "hell - I'm not having this, up and at 'em" and everything else in between. I live in England and have found this site an enormous source of information and support.
It doesn't matter what type of ca we have - we are all here supporting each other and sharing information. I bless the day I found such a great group of women.
Kindest wishes
Helen

MJ5's picture
MJ5
Posts: 14
Joined: Feb 2011

Hi, Helen, so nice to hear from you, although I am so sorry to hear you are going through this too. It is very touching to read posts like yours. I know what you mean when you say ca seems to get stronger every time it is zapped. Mine was Grade 2, now grade 3. I do seem to have a little more hope than I did. I think I just kind of gave up, but now I am thinking there are folks out there who have beat stage 4 cancer for a long time, so why can't I be one of them?

Have you been on Megace? I was on Megace with my first occurrence, but my oncologist now is a bit reluctant to put me on it. I think I am going to push him for it, because I just completed chemo (8 rounds). I hate doing nothing. I am looking for a naturopathic treatments now. I realize they have their limits once cancer is this advanced, but I still would like to try something.

I see a lot of clinical trials (mostly in the U.S.) for endo. ca. A lot of them are biological agents. I amj hoping that we can keep the cancer under control until maybe one of these biologic agents show good results.

Thank you for your kind words. And best of luck to you.

M.J.

HellieC
Posts: 436
Joined: Nov 2010

Hi MJ
No - I'm not on Megace but I will be asking my consultant about it when I see her on 9th March. In the UK, they don't seem to use it if you're in remission, but it comes into play if you get distant mets. So far, my recurrences have been all pelvic, so I am hoping my latest CT scan will not show anything further afield.
Like you, I am hoping that we can kep everything under control until a magic bullet comes along!
Every hopeful!
Helen

Northwoodsgirl
Posts: 201
Joined: Oct 2009

Hi MJ and others...I read MJ's posting and it hit me in my heart. I had endometrial cancer which traveled into my cervix. 2B. I am post treatment a little more than a year. I also have the emotional lows where I don't think I will ever feel like I did before the diagnosis. Ten years after the diagnosis and getting cancer again is something we all fear. It is a sometimes a very lonely journey because the only people who truly understand what we have dealt with an do deal with are the other women who have and will fight the good fight. Sometimes I think that the American Cancer Society should have a SKYPE connection mechanism. I wonder if anyone actually has used Skype with the other cancer fighters on this discussion board. I also have read postings and posted with tears streaming out of my heart...Praying that the Taxol and Carbo put you into remission again.
{{{{HUG}}}}
Lori

MJ5's picture
MJ5
Posts: 14
Joined: Feb 2011

Hugs to you too! You are a sweetheart. I freaked out when I met people who had recurrences the first time I had cancer. I am glad you are only Stage 2B, although I realize even Stage 1 can have a recurrence.

I always feel better after I cry. It seems I spend too much time trying to talk myself out of feeling what I am feeling, which only makes the feelings stronger! Once I cry, and read posts from people like you, its easier for me to live in the moment and enjoy the day.

I send you lots of healing thoughts and prayers, Lori.

M.J.

Kaleena's picture
Kaleena
Posts: 1079
Joined: Nov 2009

Hello M.J., Helen, Lori and Sara:

I haven't been on for a bit, so in response to M.J.'s question on what is NED it means "No Evidence of Disease".

M.J., you had mentioned something about feeling lonely. I know what you mean. My story is not typical. I originally had my hsterectomy i 2005 due to severe endometriosis. I questioned about cancer and about having a scan prior and they said it wasn't necessary. Well when I went back for my follow up after my hysterectomy is when I was told the news and then referred to a gyn/onc. I had to have another surgery a month later for staging. They didn't find anything else, washing clear, etc., and was staged at Grade 2, Stage ii/iiia. Had a port put in and did the Taxol/Carbo treatment. However, I was allergic to taxol and so they switched to Gemzar. After chemo was done, I had 3 brachy therapies. I then followed up with 6 month check ups and CT scans. About three years being NED, I started to have pain which I thought might be a hemmeroid. The spot had always showed up on the CT scan since my initial surgery, but believed it was scar tissue.

My original doctor retired so for a year I was seeing a new doctor who could care less and never even physically examined me (always had his intern). I had questioned a CT Scan because it said I was 89 years old when at the time I was 47. So I had them "redo" the report. Originally when the doctor reviewed the report it was fine, but when he got the redo he called me (Christmas Eve night) to say I should have a CT Scan done in 5 months. Nice huh? I told him the report he got was the same one he told me not to worry about.

Long story short, in July of 2009 I got another CT scan. The doctor's office called me to say that there was a recurrence and had to come in for a meeting. I scheduled the meeting but instead of meeting with the doctor, I had to wait for an hour (7:00 a.m. was my appointment). I had to wait until they found my original chart. Hmm. Didn't even review it. The "fellow" working there came in while my dr was looking for my records. We asked him to show us the recurrence. He couldn't find it. Then the dr came in and for the first time did the internal and said there it is and it is in a touch spot.

So I got dressed and we had to meet with him in his office. First thing he said was that I had to start chemo immediately, he didn't care that I was allergic to taxol he could give me something to combat the reaction, then I would have surgery (which would result in me having a colostomy) and then more chemo, surgery, etc. He then wanted me to have a PET Scan and get a biopsy. I felt he seemed "happy" because he finally got to go stuff on me so my husband and I left.

We got a PET Scan two days later (which was negative). The doctor wanted me to have a biopsy on Monday because he was going on vacation Tuesday. I did not go. I was seeking another opinion. When I picked up my records he wrote Patient seeking help elsewhere and closed my records. Anyway, new doctor (in another hospital) did biopsy in October 2009 which came back positive. So he sends me for a CT Scan with contrast. Again, comes back negative. So they send me for an MRI. Again, negative. His intern calls me and wanted to me start radiation right away. I said no, I wanted a meeting with the doctor. We met with the doctor and he says he couldn't operate and gave me to his partner who also was with my old doctor. I set up a meeting with this doctor and my radiologist. The doctor stood outside the radiologists door at my meeting asking what do we have in there after being one-half hour late. He comes in, does exam and says I can't operate it is attached to the wall. It would be a 10 hour surgery and I won't do it. He gets up and leaves. My radiation doctor says we could start the radiation program but once he radiates that area, if it comes back he could not radiate the area again. So we left again.

Went out of state. Gathered all my slides, etc. and met with new doctor. They reread the biopsy slides and confirmed it. He examined me and said he would meet with a team of doctors to decide my treatment, options, etc. He called and indicate they believe they could get the tumor and it would be a short surgery. So I was scheduled in January of 2010 for surgery. The night before surgery after doing the prep I was notifyied that my doctor was hospitalized! Yikes! Postponed surgery to February. Successful surgery. They got it all, no colostomy! All initial findings were negative.

My one lymph node had microscopic cells. I decided not to do anything yet. I have had two PET Scans since then and all is good. Although I still have my port. No one wan't to take it out. I was getting in flushed every month but now the hospitals where I live won't do it because my doctor is out of state even if I have a prescription. Nice, huh.

If it comes back in the same area, there is a change that it could effect my left leg and walking. But after a year since my surgery, I feel great. Also, at the same time the repaired my HUGH hernia from my initial surgery back in 2005. Now I am not lopsided anymore!

Sorry about the long story. My best to all of you!

Kathy

Kaleena's picture
Kaleena
Posts: 1079
Joined: Nov 2009

Did any of you ladies during your time before a recurrence felt like when you went to the doctors that you just went through the motions? Feel kind of lonely because you are NED? I mean like what do you do? You are not in treatment, although you feel all of the anxiety associated with hit. Always feeling like you have to look over your shoulder.

How about this? My family and I are in the process of buying a house. It created great stress for me which I didn't share with my husband initially. Finally, I said what if it comes back? I didn't want to cause any stress or stuff like that. ALthough my PET Scans in June and November were negative, I was to have another one in six months which would be in April. The NP at the office won't schedule me for one saying I probably don't need one.

Then I started feeling a pain in my back below my rib cage and lower back. Of course, I freaked. Then after walking with my friend for 2 miles, I had a little spot of blood which I believe was from my hemmorroid. I called the doctor's office but the NP didn't seemed concern and said to go to my General Practioner.

We got a new mattress and my back pain went away. I have had no more spotting when I wipe.

The move is a good move. Financially it is a good thing. We own our own business and economically it is a smart move. After talking all of this over with my husband, I feel less stress. I should have discussed this all with him before we even started to look!

I see the doctor in June. I keep getting pushed back.

Thank you for letting me share this with you.

Kathy

lkchapman's picture
lkchapman
Posts: 105
Joined: Jan 2011

Dear Kathy,
Yes, I feel very lonely. I haven't had a recurrence, but with a stage IIIc UPSC diagnosis (finished adjuvant treatment in August 2009)I can't help but think it is right around the corner. While I was in treatment my doctor and his staff were great, but now when I go in for my checkup it's like they can't get me out of there fast enough! I need to get up the courage to tell them the trouble I am having with this as I am sure they would refer me to someone for help, but I have difficultly talking about it. What makes it worse is that I work for the same cancer hospital at which I am a patient. I code medical records for them and I read about cancer and it's devastating affect on people day-in and day-out. They are a really big hospital and there are so many of us out there suffering. Sometimes I think that I just can't sit down at my computer one more day and read about it. I hate my job!
I have to remind myself everything happens for a reason. I would probably be dead if I didn't work where I work, because I was coding a patient's chart who was having the same symptoms I was having. My obgyn kept telling me my symptoms were the normal symptoms of fibroids for 5 years! I would get ultra sounds and paps. Finally I had a patient who had endometrial cancer with the same symptoms so I went in and insisted on a biopsy. My doc was flabbergasted! She couldn't believe it because I didn't fit the stereotype.

Enough of my rant. It's good that you are buying a house, it will surely help you move forward with your life. We must always keep planning for our future! We will have one!

With much understanding.
Laura

Kaleena's picture
Kaleena
Posts: 1079
Joined: Nov 2009

Thanks for your reply Laura. I too knew I had something and kept going to the doctor. I had a colonoscopy from my GP, then I went to gyn. Had a laparoscopy and said I just had severe endometrosis and suggested a hysterectomy. It wasn't until after the path report came back that cancer was detected. The doctors were surprised. I also had a gyn/onc assist with the original hysterectomy in case a bowel or bladder was nicked and he didn't even see anything.

Well anyway that was back in 2005. I will enjoy moving into the new house. Thanks for the kind words. Every now and then we need a little boost!

Kathy

Sunny777
Posts: 7
Joined: Jan 2011

I was diagnosised with endometrial adenocarcinoma stage I in November. They took 46 lymph nodes and they were all clear. I'm so thankful it was all good. But sometimes I feel like everyone tells me it's over and forget about it. I try to do that, but I still feel afraid some of the time. I don't feel like I used to, I get tired so easily. Sometimes I feel like I shouldn't talk about it because I have a good prognosis. So I jsut feel confused and alone. I just needed to say this. Thanks for listening.

HellieC
Posts: 436
Joined: Nov 2010

Feeling confused or frightened after a cancer diagnosis, regardless of grade or stage or prognosis, is quite normal and it doesn't always go away just because of successful surgery! I know how you feel - after my hysterectomy in 2001, friends and family all wanted to move on and forget it, but for us, it will always be there.
We're here for you any time you want to say anything to people who understand.
Thinking of you
Helen

california_artist
Posts: 850
Joined: Jan 2009

the best advice. lovely name by the way

Ah, here's the thing, and i've said this many times before in many different sections, There is a reason that cancer was able to get a hold in your body. i know that doctors tell you that it was nothing you did or could have prevented. But what if that's not right. Also, that gives you a helpless bent. you know what i mean. my suggestion is quite simple. Take a good hard look at your lifestyle and the foods you eat, the amount of stress you are under, the things that are good in your life and kinda think about in relation to how cancer thrives. See if there aren't things you could do to make your body a less friendly place for cancer. i fear that if there are no changes made, it is likely that the same thing will happen again.

Take charge of your life. if you have to tell people when things stress you out and ask them not to do those things for the simple fact that your immune system can only do one thing at a time, sorta, and if it's divereted coping with stress, it can't fight cancer as well, you are helping your body. Exercise and sing.

claudia

Sunny777
Posts: 7
Joined: Jan 2011

I've been trying to make changes to my lifestyle, but I do struggle sometimes. I'm a workaholic and it's been hard to back off the amount of hours I work. I do have a supportive supervisor and she's pushing me out of the office. I'm going to keep working at keeping down stress. I'm getting back to exercising now that I'm starting to fill a little better. Thanks to all for your input and encouragement

MJ5's picture
MJ5
Posts: 14
Joined: Feb 2011

Hi, Sunny,

My heart goes out to you when you say "I feel like I shouldn't talk about it because I have a good prognosis". It doesn't matter. Really, pain is pain. Cancer is such a scary word. I don't understand why someone who hasn't gone thru what you have gone thru would tell you to "forget about it". But they said the same sort of things to me too.

The fear will subside over time. I think denying the fear is more damaging than expressing it, so I'm glad you could state your truth. Also, I was exhausted for a long time after my hysterectomy. I think surgery was really hard on my body. More so than chemo. Maybe the psychological toll contributed to the exhaustion as well. Well, not to mention the relentless hot flashes that kept me up all night!

You mentioned elsewhere that you are a workaholic. I am also. I am not working right now, thank goodness. I know things are going to get easier for you.

Hugs, MJ

MJ5's picture
MJ5
Posts: 14
Joined: Feb 2011

Hi, Kathy,

Post-treatment anxiety is perfectly normal. Every new pain, we ask the question "Is it the cancer?" That fear will subside over time. It did for me. And it has for everyone I know that has had cancer.

I am glad you bought a house. It's important that we keep living while we are living, if you know what I mean.

Because I do have a poor prognosis, I kind of put my life on hold. I was like "Well, I don't know what's going to happen, so I can't plan this or that." I finally decided that even if I only have a few weeks to live, I want to move somewhere a little more peaceful than my current house. I am only going to rent, but nevertheless, it is kind of turning point for me to say that I am going to move.

I hope your doctor appt. doesn't get pushed back any further.

I agree with Laura. You will have a future. And I am hoping for that for myself, as well!

Best wishes,
MJ

MJ5's picture
MJ5
Posts: 14
Joined: Feb 2011

Wow, what a merry-go-round you have been on! You must be pretty strong to get through all that. I have to say, I find going thru the medical professionals (docs, nurses and office staff ) and thru the insurance maze has been harder than the treatement itself. But your story tops mine, that's for sure. I tend be hyper-vigilant at times, because mistakes were made with me. I wish I could just sit back and trust everything that I'm told, but I can't.

I am glad the surgery was successful. It sounds like you made a wise choice to go out of state. I can't believe you can't get someone to flush your port now. It's things like that I have such a hard time with.

Thank you for your story! I am glad to get to "meet" lovely women like you!

sleem
Posts: 92
Joined: Feb 2010

I do have UPSC. Yet, still feel like sisters. Hold firm... and know you have people out here

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Hi Ladies,

I am a latecomer to this thread - just read it and can relate to so many of your feelings.
A long time ago I came to realize that even though we share so many things here and with our docs and friends, we are all alone in this fight ultimately. NO ONE really knows what we are dealing with!

It's all pretty scary. And the issue of stress and dealing with insurance is a big one for me too. It seems like I get going on a smooth patch for awhile and then out of the blue some crazy insurance snafu happens and I fall apart emotionally - "why, is this happening? Why does this have to be so hard?"

It's scary to be in treatment and scary to not be in treatment too - "nothing is being done to tame the monster" I think. I finished chemo and radiation for recurrence of UPSC in Nov and am now getting some effects to my blood vessels in my neck. Anxiety. My husband is contributing to it with his worry. I think, is this going to get worse? Will I end up with clogged arteries? possibly a stroke? All real possibilities.

Re: poor prognosis. I struggle with optimism. I liked evertheoptimist's posts - she helped me see things in a brighter light. It's hard to know exactly what to do and not to do. I'm trying to do the best and enjoy life and do things that are healthy but not fanatical. I work part time now, and applied for disability - a recurrence of UPSC was enough to get it smoothly - no lawyers or waiting.

Thanks for giving me the opportunity to share and vent a bit. I am NED and I plan to continue with the simpler and less stressful life.

I wish you all much peace, joy, and blessings. Mary Ann

Ro10's picture
Ro10
Posts: 1407
Joined: Jan 2009

Sorry to hear you are having issues after your radiation to your neck. What kind of effects are you having with your blood vessels? I thought when your "soreness" went away in your throat you would be good. Sorry to hear that is not true.

I know how you hate to worry your husband, too. Hope your anxiety is relieved soon.

I ordered a shirt from the "Choose Hope" site with the peach ribbon and it says "No One Fights Alone". I feel like I have lots of people helping me in my Fight. I have another shirt which says "Fight Like a Girl" with the peach ribbon on it. I plan on fighting for a long time.

I am reading your favorite book by Simonton, and getting some good ideas on "Getting Well Again" I am practicing the relaxation and mental imagery to help my body fight this cancer. I think my body is stronger than the cancer.

Speaking of insurance, two years after you recieve you first check for disability, you qualify for medicare. I become eligible for Medicare on 4/1/11 and I have my next chemo on 4/5/11. Will be curious about the coverage Medicare and my supplemental give me compared to what my Blue Cross Primary gave me. I found it interesting that when I go on Medicare, to continue Blue Cross as supplemental was more than twice the cost of carrying Blue Cross as a Primary Insurance. Does not make sense to me. They said since I am on 62 the premiums are higher until I reach 65.

Another interesting fact I found out regarding Medicare. If I kept my Blue Cross as my primary, and did not accept Medicare in April. I would not become Medicare eligible until 7/12. We considered that since I have met my deductible for 2011 with Blue Cross. But then that would mean I would have to meet the deductible again in 2012 since Medicare would not kick in until 7/12. I just hope Medicare and my supplemental cover as well as Blue Cross did.

Glad you could come and vent, but I hope your positive imagery gets rid of "Chester" forever. May you continue to enjoy NED. In peace and caring.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Hi Ro,
Thanks for your support. I didn’t mean to sound so dire – ‘cause I’m not depressed. Just venting abit. The neck problem is only a couple weeks old. Just kind of started slowly – when I bend my neck I feel pins & needles go through the left side of my body (almost like electricity). I mentioned to my doc and he said it was from radiation – damage to smaller blood vessels but that my larger vessels would be OK. I hope he’s accurate. I will monitor and if it gets bad I guess I will see someone about it. I need to start the aspirin/day thing. I’m really in pretty good physical shape and plan to join Gold’s Gym tomorrow!!!

Glad you like the book. I think it’s pretty great.

I’m curious about the medicare thing. Did you apply for Disability 2 years ago?? If so, you are lightyears ahead of me. I still have over a year to go till I’m eligible on age – which will be sooner than disability. I appreciate any guidance I can get from you and others going through this. I had a recent change in insurance and ran into a brick wall regarding my port flush. It finally ended up that a home health nurse comes to me!! Doesn’t make much sense to me either.

I hope you continue to do better with your chemo. I had my 3 month check last week and doc could not resist telling me good news about CA125 (our agreement was that he would only tell me if it was bad). But it went down to 9 and HE 4 was 67. Great numbers. So I am good to go for another 3 months.

I sang Mahler’s 2nd symphony with my chorus and a full orchestra last night – it was sooooo magical (check out this link http://www.youtube.com/watch?v=d6idPaGqvV8). We filled the stage at the concert hall with 150 singers and 90 piece orchestra – life really is good, Ro. Our chorus has improved a lot with our new conductor but the symphony couldn’t afford us anymore so we are organizing an independent organization. Pretty exciting stuff – I’m on organizing board.

Thanks for listening to my musings. I think you are inspirational with your positive attitude. I am positive 95% of the time. I’m really fascinated by the placebo effect – I need to apply that concept to myself. I think Simonton’s work is in this realm.

Take care, my friend. Love, Mary Ann

Ro10's picture
Ro10
Posts: 1407
Joined: Jan 2009

Glad you come here to vent. We all need to vent at times. Sometimes more than others. Sorry to hear about the neck problems. Sound uncomfortable.

I did apply for disability in 4/09. I went to a lawyer in Illinois who specializes in SS disability. Because I was a nurse and unable to work the 12 hour shifts, and should not be around people with infections I was granted the disability. He used something called the "compassionate act". I am not sure of those exact words. I read about applying for disability in the Kris Carr book. So I thought I would apply.

The lawyer took the initial diagnosis from my abnormal PAP that was "highly suspicious for adenocarcinoma" in October 08. I had my surgery 1/09 which diagnosed UPSC STage III-C. And I got my first disability check in 5/09 for both 4/09, and 5/09. You have to be disabled for 6 months before you get your first check. The lawyer I went to only collected a fee is I was approved for disability.

I know Deanna who was also a nurse was approved disability for a certain period of time. But she was only 39 years old. My letter did not have a time limit for the disabililty, but I was 60 when approved. I am pretty sure Deanna was diagnosed as III-C as I was also.

Two years after you receive your first disability check you qualify for Medicare. So that is why I qualify for Medicare 4/11. To be honest with you, I did not think I would ever qualify for the medicare. Knowing the cancer would recur, I am so happy that I have had this long before the recurrence. I plan on getting through this round of chemo and have another long period of no treatments.

I am doing very good with this second round of chemo. I have had some nausea and had to take compazine. It makes me so tired, though, so I tried the Zofran. I did not think it helped the nausea as much as the compazine though. I have not needed any for the past several days.

My thrush is getting some better, but I still have it. I have several days of medicine left, so I hope it goes away. Food is tasting a little better these days. Another week to go before chemo #3.

Your concert sounds wonderful. I plan on checking out the youtube video when I finish here. So glad you continue to enjoy singing. It is such a wonderful outlet. The orchestra and singers sound like a wonderful combination.

I continue to read the Simonton book, and hope to apply some of his ideas into my lifestyle. Thanks for encouraging his book. I think it is helpful.

I am so glad that you say "life really is good". Celebrate each day. In peace and caring.

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